From Intersex to Disorders of Sex Development: A ......From Intersex to Disorders of Sex Development: A Foucauldian Analysis of the Science, Ethics and Politics of the Medical Production

From Intersex to Disorders of Sex Development: A Foucauldian Analysis of the Science, Ethics and Politics

of the Medical Production of Cisgendered Lives

by

Catherine Clune-Taylor

A thesis submitted in partial fulfillment of the requirements for the degree of

Doctor of Philosophy

Department of Philosophy University of Alberta

© Catherine Clune-Taylor, 2016

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Abstract This dissertation takes up the revised treatment model for intersex conditions introduced in

2006, which controversially reclassified them as Disorders of Sex Development (DSDs). It

provides a critical Foucauldian analysis of the science, ethics, and politics underwriting

medical efforts that aim at securing cisgendered futures for patients unable to provide

informed consent. These include not only pediatric management strategies for intersexed

children, but also certain efforts used to treat children diagnosed with Gender Dysphoria

(GD). Motivated by critiques of both the DSD treatment model, and of the arguments

issued by those intersex activists and feminist academics who strategically endorsed it, I

review the entangled histories of clinical medicine, feminist scholarship, and intersex

activism that constitute the background out of and against which this revision in treatment

model and nomenclature emerged in 2006. Those who strategically endorsed DSD had

hoped to bring about a reduction in the frequency with which genital normalizing surgeries

were performed by rhetorically shifting both clinical and parental focus on to properly

medical issues of “health and human flourishing,” and away from cultural concerns

regarding gender and identity, the latter of which were seen as motivating and justifying

these surgeries. Unfortunately, this strategy appears to have failed and almost a decade after

the adoption of DSD, it is accepted within the literature that the genital normalization of

intersex infants occurs as frequently as it did before. I diagnose the failure of DSD, situating

it in the biomedical model itself, and the binary nature/culture logic underwriting the

objectivist account of pathology it appeals to. This logic paved the way for further

problematic binaries—most importantly sex/gender and impairment/disability—as well as

the adoption of a sovereign or juridico-deductive account of power. This conceptual scheme

misrepresents the ways in which medical knowledge/power functions to render certain lives

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unliveable, and obscures the historical constitution of sex/gender and impairment/disability

as binaries under biopower. Through a review of the DSD nomenclature and clinical

recommendations, I conclude that insofar as the primary aim of intersex management is

securing a cisgendered future for the intersex infant, the core pathology of intersex

conditions is constituted in terms of Cisgendered Function—that is, the function of one’s

physical sex characteristics are presumed to perform insofar as they are taken to provide a

stable ground upon which reliable predictions about one’s future gender identity, behaviors,

and preferences or desires can be made. I go on to reconstruct and then critique the most

compelling philosophical answers to the question that clinicians tacitly believe has a self-

evident response, and which partially determines both the biopolitical correctness and

ethicality of the use of efforts to secure cisgendered futures for those unable to provide

informed consent: Is being gender variant or non-cisgendered a pathology? I then defend the

position that pathologies of Cisgendered Function are not only socially constituted, but

primarily bureaucratic in nature, licensing the medical normalization of certain populations

with regards to gender, and the withholding of such forms of normalization from others.

For those diagnosed intersex or trans* children unable to provide informed consent, this

normalization defaults towards the production of cisgendered lives, and where this cannot

be achieved, such efforts aim at the production of lives that can pass as such. Finally, I

consider the implications of these conclusions for ethical medicine and political resistance in

the aftermath of DSD. Using a Foucauldian account of ethics and freedom, I defend a

moratorium on medical efforts to secure cisgendered futures for those unable to provide

informed consent, and timely and affordable access to medical forms of gender-confirming

normalization for those trans* and intersex individuals who can.

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Preface This thesis is original work by Catherine Clune-Taylor. A version of arguments presented in Chapter Two and Chapter Three were previously published in Clune-Taylor, C (2010). From Intersex to DSD: The Disciplining of Sex Development. PhaenEx: Journal of Existential and Phenomenological Theory and Culture, 5 (2): 152-178.

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Dedication

To my parents, Suzanne Clune-Taylor and Lawrence Beauford Taylor, who worked as hard and sacrificed as much as I – if not more – in order to bring this project to fruition. They are the ones who constituted this future as one that was possible for me, and did so against overwhelming odds. To my three best friends, Jacqueline Batista, Paolo Zinatelli, and Mike Dalla-Guistina, who have kept me sane over many years, many words, and many miles. And to the memory of Tyler Barton (July 10, 1982 – September 14, 2013), who devoured life in a way that continues to both ground and inspire me, every single day.

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Acknowledgements

First and foremost I must express my deepest gratitude to my inimitable supervisor, Dr. Cressida J. Heyes. Under your astute intellectual guidance, I have both discovered and refined capacities that I didn’t know I had, or was capable of. Because of you, I am a far better philosopher and this is a far better philosophical contribution than I ever imagined possible. Further, whatever space I had to make these discoveries and do this philosophical work was one created by your unwavering and resilient support of and belief in me. The odds were not in our favor here – whatever victory this represents is one that we share. I would also like to thank my examining committee and, in particular, my external examiner, Dr. Judith Butler. I am unable to clearly articulate just how meaningful her generous support of my research is to me, or just how grateful I am for it. Further, her incisive questions and keen philosophical insights have drawn into relief lines of research extending from this project that could easily sustain me for years to come. Many individuals have encouraged, mentored, educated, inspired and challenged me over the years in ways that have been instrumental to both my pursuit of philosophy, and my completion of this project. This includes Tracy Isaacs, Samantha Brennan, Carolyn McLeod, Helen Fielding, Kim Verwaayen, Chloë Taylor, Ada Jaarsma, Alexis Shotwell, Michelle Meagher, Kristie Dotson, Ami Harbin, Robert Nichols, Catherine Kellogg, Heather Zwicker, Ladelle McWhorter, and Alice MacLachlan (and my apologies to those I have forgotten). I was able to present arguments from this dissertation at conferences because of the generous support I received from Cressida Heyes through her position as Canada Research Chair in the Philosophy of Gender and Sexuality. I would like to thank attendees of various meetings of the Canadian Society for Women in Philosophy, the Canadian Philosophical Association, the International Society for the History and Philosophy of Biology, the Foucault Circle, the International Approaches to Feminist Bioethics Network, and philoSOPHIA for their constructive feedback. I would like to recognize the Philosophy in an Inclusive Key Summer Institute (PIKSI) at Penn State for providing me with the rejuvenating opportunity of serving as a Graduate Assistant. I would also like to acknowledge the support I received from the Department of Philosophy at the University of Alberta, and through the Situating Science Cluster Grant. I must acknowledge the legion of fabulous humans whose friendship and support was essential to both the completion of this project and to my sanity. This includes my first community of philosophers: Nick Ray, Julie Walsh, Spencer Hey, Elana Geller, Alex Beldan, Wayne Barco, Michael Doan, Michel Hebert, Nicholas McGinnis, and Amy Butchart. My necessary and beloved friends who do not identify as philosophers (no matter what I might say): Mariam Ibrahim, Erica Sum, Stacy Meyerink, Anthea Black, Lucas Crawford, Katie Vikken, Alison Lang, Katrina Haasen, Megan Bertagnolli, Brian Scarth, and Todd Coleman. Finally, I must thank the community of philosopher-friends who gave me a community in which I could live and write in Edmonton: Kristin Rodier, Megan Dean, Joshua St. Pierre, Charis St. Pierre, Emma Kennedy, Emily Douglas and Ingo Brigandt. I would be remiss to not specially acknowledge both my cabal – Zoe Todd, Sarah Shulist and Danielle Lorenz – and those special CAMPERS who helped keep me sane those last few months in particular. I must also express my sincere gratitude to Joshua St. Pierre for his amazing, skillful work as both a copyeditor and proofreader. Finally, I dedicate this work to my family, whose hard work and support allowed me to undertake and complete this project: my parents, Suzanne Clune-Taylor and Lawrence Beauford Taylor, and my three best friends, Jackie Paolo and Mike. Love you kids.

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Table of Contents

Introduction .......................................................................................................................................... 1

Chapter One: ....................................................................................................................................... 26

From Politicized Intersex Activism and Feminist Critique to Disorders of Sex Development ............................................................................................................................................................... 26

I. Introduction ............................................................................................................................................... 26 II. (Inter)Sex, (Optimal) Gender (of Rearing) and the Feminist Academy ......................................... 33 III. From the Intersex Society of North America and “Hermaphrodites with Attitude” to the Accord Alliance and Disorders of Sex Development ............................................................................. 41 IV. Post-Intersex/DSD ............................................................................................................................... 56 V. The Arguments for DSD ....................................................................................................................... 66 VI. Conclusion .............................................................................................................................................. 70

Chapter Two: ...................................................................................................................................... 81

Diagnosing the Failure of DSD: ...................................................................................................... 81

Medical Power/Knowledge and the Fictitious Unity of Sex, Gender, and Sexuality .............. 81 I. Introduction ............................................................................................................................................... 81 II. Troubling DSD ........................................................................................................................................ 81 III. Diagnosing DSD’s Failure (or Nature/Culture, Sex/Gender, and Impairment/Disability) ..... 92 IV. The Constitution of Impairment and the Deployment of Sexuality ........................................... 104 V. John Money and the Production of Dimorphic of Sex via Binary, Univocal Gender ............... 121 VI. Conclusion ............................................................................................................................................ 129

Chapter Three: .................................................................................................................................. 133

The Disordering of Sex Development and the (Re)Production of Cisgendered Lives ........ 133 I. Introduction ............................................................................................................................................. 133 II. How Should We Classify Intersex Disorders? .................................................................................. 135 III. Intersex, Hormones, and Brain Organization Theory ................................................................... 153 IV. OGR vs DSD: The Clinical Recommendations ............................................................................. 161

A. Shifting Ideas on Sex Assignment ................................................................................................. 162 B. Fetal Dex ............................................................................................................................................ 166 C. Puberty Suppression ......................................................................................................................... 171

V. The Normal Functions of Physical Sex: Reproductive, Hetero-Coital, and Cisgendered ......... 181 A. Reproductive Function .................................................................................................................... 181 B. Hetero-Coital Function .................................................................................................................... 185 C. Cisgendered Function ...................................................................................................................... 194

VI. Conclusion ............................................................................................................................................ 196

Chapter Four: .................................................................................................................................... 202

Securing Cisgendered Lives: ........................................................................................................... 202

A Critical Analysis of the Pathologization of Gender Variance ............................................... 202 I. Introduction ............................................................................................................................................. 202 II. Pediatric Management of Intersex Conditions and Gender Dysphoria: Medical Efforts to Secure Cisgendered Lives .......................................................................................................................... 204 III. A Critical Analysis of Pathology ........................................................................................................ 210 IV. The Pathology of DSDs ..................................................................................................................... 221 V. Gender Variance and Mental Disorders ............................................................................................ 229 VI. From Gender Identity Disorder to Gender Dysphoria ................................................................. 244

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VII. Conclusion .......................................................................................................................................... 262

Chapter Five: ..................................................................................................................................... 264

Ethics, Medical Knowledge/Power and Politics After DSD .................................................... 264 I. Introduction ............................................................................................................................................. 264 II. Ethical Medicine and Politics Under Biopower ............................................................................... 270

A. Ethics .................................................................................................................................................. 270 B. Language ............................................................................................................................................ 275 C. The Body ............................................................................................................................................ 281

III. Administrative Violence and the Government of Gender ........................................................... 286 IV. Conclusion ............................................................................................................................................ 294

Conclusion ......................................................................................................................................... 295

Works Cited ...................................................................................................................................... 300

Appendix A: Common Intersex Conditions and their Etiology, Frequency, Symptomatology, Psychosexual Outcome Data and Differential Treatment Under OGR and DSD ............... 316

Appendix B: Gender Identity Disorder in DSM-IV-TR and Gender Dysphoria in DSM-V ............................................................................................................................................................. 327

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List of Tables

Table 1 Nomenclature Revision Proposed by the “Consensus Statement on Management of Intersex Disorders” ………………………………………………………………………24 Table 2 Intersex Conditions Sorted by DSD Classification…………………………….......79

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List of Figures or Illustrations

Figure 1. My Father and I, Age 3………………………………………………………...2 Figure 2. The Steroidogenesis Pathway………………………………………………..130 Figure 3. Boorse’s Illustration of the Normal and the Pathological……………………168 Figure 4. The Prader Scale………………………………………………………….…176 Figure 5. Normal Distribution of Heights in Hypothetical Population A……………...214

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Glossary of Terms

5-α-Reductase Deficiency: a condition wherein a decrease or loss of 17β-hydroxysteroid dehydrogenase activity leaves one unable to interconvert testosterone and dihydotestosterone, leading to atypically low androgen production prenatally. Phenotypic presentation among those with XX chromosomes and 5αRD2 deficiency can vary, however, the majority present as typically-female at birth and begin to virilize at puberty in response to endogenous testosterone production using other isozymes of the enzyme within the extraglandular tissues (Andersson et al, 1996). 17β-Hydroxysteroid Dehydrogenase-3 Deficiency: a condition wherein a decrease or loss of 17β-hydroxysteroid dehydrogenase-3 activity leaves one unable to interconvert testosterone and androstenedione, leading to atypically low androgen production prenatally. Phenotypic presentation among those with XY chromosomes and 17β-hydroxysteroid dehydrogenase-3 deficiency can vary, however, the majority present as typically female at birth and begin to virilize at puberty in response to endogenous testosterone production using other isozymes of the enzyme within extraglandular tissues (Andersson et al., 1996). Cloacal Exstrophy: a condition associated with the protrusion of the abdominal organs through the abdominal wall such that infants are born with their intestines and bladder exposed. Cloacal exstrophy is also associated with short-gut syndrome, separated pubic bones, and splitting and/or underdevelopment of the urogenitals, as well as other conditions such as spina bifida and clubfoot. Congenital Adrenal Hyperplasia (CAH): 90-95% of all cases of CAH are the result of either a decrease or complete loss of 21-hydroxylase activity. As a result, progesterone substrates 21-hydroxylase would typically convert to deoxycorticosterone and 11-deoxycortisol begin to accumulate and are converted by active enzymes in the environment to androgens, leading to an increase in androgen production and the masculinization of XX individuals over the lifespan. Complete Androgen Insensitivity Syndrome (CAIS): a condition wherein an individual’s androgens receptors are completely insensitive to these substrates. As a result XY infants have a female-typical appearance at birth. De La Chapelle or XX Male Syndrome: a condition wherein an individual has chromosome that has acquired material from a Y chromosome in a crossing-over event. If this material includes the “sex determining region on the Y” (SRY) gene, XX infants will generally have a male-typical appearance at birth and be sterile, however, they may occasionally present with undescended testes and hypospadias. The phenotypenof those XX infants who lack the SRY gene (or are SRY-negative) can rang from male-typical to ambiguous. Gender Identity Conversion Efforts (GICE): a term coined by Drescher (2010) referring to those efforts that aim at securing cisgendered futures for children diagnosed with gender

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dyspohoria (or previously, Gender Identity Disorder). Practically, GICE include “promotion of same-sex peer relations; encouragement of gender-typical and ‘neutral’ activities; limit-setting of cross-gender behavior; and dialogues on gender” between both the physician and the child, and the parents and the child (Zucker, 2008, p. 360). Gender Identity Disorder (GID): diagnosis for those whose gender fails to cis-align with their sexed body, the core construct of which is a combination of 1) the identification with the other gender and 2) “a sense of inappropriateness, if not rejection, of one’s assignment to the natal gender, with the key specifiers of age (in terms of some age-specific criteria), gender (including some gender-specific criteria for childhood), and sexual orientation (for adolescents and adults)” (Meyer-Bahlburg, 2010, p.462). GID was first introduced by the APA in DSM-III (1980) under the diagnosis “Transsexualism” and redefined as GID in DSM-IV (1994). Gender Dysphoria (GD): diagnosis introduced by the APA to replace GID in DSM-V (2013) in order to narrow the diagnosis to those who are both gender variant and experience dysphoria as a result of that gender variance (as opposed to those who are merely gender variant). Gonadal Dysgenesis: general term referring to atypical development of the gonads. Hypospadias: a condition in which the opening of the urethra does not extend to the tip of the penis. In its mild form, the urethral opening is located on the head of the penis (or the glans penis), whereas the urethral opening is located along the shaft of the penis in cases of moderate hypospadias. Finally, in the cases of severe hypospadias, the urethral opening is located below the penis, on the body wall. Intersex Society of North America (ISNA): the first specifically intersex activist organization founded by Cheryl Chase in 1993 in response to Anne Fausto-Sterling’s article “The Five Sexes: Why Male and Female Are Not Enough.” In 2008, the ISNA dissolved and formed as the Accord Alliance, a medical lobby group that eschews the term (and identity) “intersex”. Karyotype: refers to the number and appearance of chromosomes in the cell nucleus. Klinefelter Syndrome: a condition wherein an individual has 47 XXY cchromosomes as the result of a nondisjunction event during meiosis, characterized possibly impaired fertility; development of feminine secondary sex characteristics at puberty. These individuals generally appear typically-male at birth. Micropenis: a condition wherein one’s penis is smaller than 2.5 standard deviations below the mean. Müllerian Ducts (or Paramesonephric Ducts): paired ducts that run laterally down the side of the urogenital ridge in the developing fetus and terminate at the sinus tubercle in the primitive urogenital sinus. In XX fetuses, these ducts typically develop into the fallopian tubes, uterus, cervix, and upper 1/3 of the vagina. In XY fetuses, these ducts typically regress.

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Non-XX or non-XY Sex Chromosome DSDs (excluding Turner and Klinefelter Syndromes): a condition wherein an individual has an atypical number of sex chromosomes as a result of nondisjunction events during meiosis that are not 45 X0 or 47 XXY (for example, 47 XYY, 47 XXX, 48 XXYY, etc). This category also includes those with a chimeric karyotype, such as 45 X0/46 XY. The majority of these patients are phenotypically male or female are thus go undiagnosed, however, there can be variability in phenotype. Optimal Gender of Rearing (OGR): treatment model for intersex conditions first introduced by John Money and his colleagues Joan and John Hampson at John Hopkins Medical Center in the 1950s based in part on Money’s doctoral research. This treatment model emphasized early surgical and hormonal assignment of sex and unambiguous gender rearing in accordance with assigned sex. It was via this model that Money introduced gender as a category distinct from sex. Partial Androgen Insensitivity Syndrome (PAIS): a condition wherein an individual’s androgens receptors are partially insensitive to these substrates. As a result, XY infants can exhibit a range of phenotypes at birth depending on their level of androgen insensitivity, from a male-typical appearance to a female-typical appearance. Sexual Orientation Conversion Efforts (SOCE): a term used to refer to any and all management strategies that aim at securing heterosexual futures for individuals with same-sex desires. Turner Syndrome: a condition wherein an individual has only one X chromosome (45 X0) as the result of a nondisjunction event during meiosis, characterized by undeveloped ovaries, short stature, lack of secondary sex characteristics. These individuals appear typically-female at birth. True Hermaphroditism: a condition defined by the presence of both ovarian and testicular tissue. World Professional Association for Transgender Health (WPATH): know as the Harry Benjamin International Gender Dysphoria Association until 2009, WPATH is an interdisciplinary association that formed in 1979 in order to create the first Standards of Care (SOC) for treating trans* patients. Both the American Medical Association and the Endocrine Society have officially endorsed WPATH’s SOC as the official treatment model for patients with GD, however, the APA has yet to do so. In 2011, WPATH published the 7th version of the document.

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Introduction My introduction to feminist and bioethical critiques of the medical management of

intersex conditions came in an undergraduate course on the philosophy of gender and

sexuality at the University of Western Ontario. At the time, I was in my second year of a

four-year Honors Bachelor of Medical Sciences program, specializing in Microbiology and

Immunology. My plan was to go eventually to medical school and specialize in high-risk

obstetrical care, as I had been particularly interested in both embryology and reproductive

immunology. I took the philosophy of gender and sexuality course with Dr. Helen Fielding

as my elective that year because, in addition to fitting within my lab schedule and satisfying

my essay requirement, it sounded like something I might find personally interesting as an out

and active member of the LGBTQ community on campus, and as someone who identified

as a feminist (though in an admittedly naïve way, without knowing much about the history of

feminism itself). The medical management of intersex conditions was the very first topic we

covered in the class, reading Anne Fausto-Sterling’s “The Five Sexes: Why Male and Female

Are Not Enough,” Suzanne Kessler’s “The Medical Construction of Gender: Case

Management of Intersexed Infants,” Robert A. Crouch’s “Betwixt and Between: The Past

and Future of Intersexuality,” and excerpts from Michel Foucault’s History of Sexuality,

Volume One. These four readings by a feminist biologist, a feminist sociologist of medicine, a

bioethicist, and a critical social-political philosopher not only disrupted my best laid plans to

become a physician (much to my parents’ chagrin), but further, motivated and inevitably set

the tone for this dissertation. These authors represent the intellectual lineages out of which

this project and the arguments presented herein emerge, and with regards to which it seeks

to intervene.

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I am not sure exactly how or when I decided I was going to become an MD, but that

dream had been with me for as long as I can remember. Even as a young child, it is the only

response I can ever recall giving when asked what I wanted to be when I grew up, and my

parents enjoyed producing photographic evidence of this desire from earlier, murkier

periods of childhood that I can’t remember (see fig. 1 below).

Fig. 1. My father and I, age 3.

Going to medical school is a fairly common dream, particularly among children of

precarious class and/or racial status given the social and class stability/mobility it promises,

so perhaps my univocal focus was (and is) unsurprising. However, I can also point to many

things in my personal history that surely guided the development of this desire. In truth, the

specter of medicine has been a fairly constant presence throughout my life. A Bahamian

immigrant with diabetes, high blood pressure, and all of the co-morbidities that accompany

those diagnoses (such as diabetic neuropathy and nephropathy), my father’s health and

complex medical needs have been an active concern that has structured much of my family’s

daily existence since before I was born. One of my earliest memories of childhood is of my

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mother and I visiting my father in the hospital during a stay in which his specialists

attempted to rejig his cocktail of medications. Until I was six, my mother worked by

babysitting my three younger cousins and I in our apartment during the day, one of whom—

Nicholas—had been born with what I think was eventually determined to be a Y-linked

chromosomal anomaly and that had presented at birth in the form of a missing eye. After

failing to thrive, physicians reassured Nicky’s mother Franny that he was likely

developmentally delayed, but that he would catch up with appropriate rehab therapies.

However, by the age of two, Nicky had undergone at least four major surgeries to close a

hole in his heart, to untangle/resect portions of his digestive system, and eventually to insert

a permanent G-tube when these latter surgeries failed. Nicky was with my mother when he

had his first seizure and she took him to the emergency room where it was discovered that

he was missing his corpus callosum, meaning the left and right hemispheres of his brain were

unable to connect. A sweet, joyful boy who was quick to laugh, he remained at the cognitive

level of an infant until his death in December 2014 at the age of 28. When my mother

stopped babysitting, she began to work as a teaching assistant to children in what was then

called an “MH” for “Multiple Handicap” class. Until my parents bought their first house in

Scarborough when I was 14, we lived in a co-operative housing unit split fairly equally

between low-income families and people with disabilities. And beyond my surroundings, I

have had a lot of my own health issues both as a child born prematurely and as a teen—for

example, I spent a week in the hospital when I was 4 years old to treat the severe childhood

asthma and environmental allergies I had likely developed as a result of a lengthy incubator-

stint in infancy. After a series of severe ankle sprains, which tore all of the already

congenitally-lax ligaments in both of my feet, I was diagnosed in my late teens with a mild,

bilateral case of congenital talipes equinovarus, better known as clubfoot. I underwent my first

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surgery to debride, reconstruct, and modify all of the ligaments in my right ankle when I was

18 and will require a minimum of three further surgeries to maintain my ability to walk, two

of which will likely need to occur within the next three years.

These experiences, I am certain, not only contributed to my fairly steely-eyed focus

on becoming a physician, but further, normalized living among and in relation with those

with at times fairly serious medical needs, as well as living as a medicalized subject with

them. In this sense, though I rarely if ever call on my own experiences in the course of this

project—and indeed, as a cisgendered woman without a diagnosed intersex condition writing

about intersex and trans* individuals, why would I?—my experiences do nonetheless color

the ways in which I think and write about not only intersex specifically, but pathology and

medicine in general. For this reason, I felt it important to acknowledge explicitly at least

some of these early and more personal experiences of and with medicalization, for they lurk

in the background of not only the path to medical school I was on when I first stumbled

into philosophy and the topic of intersex, but the arguments and analyses presented herein.

At the time of my first encounter with Fausto-Sterling, Kessler, Crouch, and

Foucault, the majority of choices that I had made in my life had been done in service of my

master plan of becoming an MD. I went to the University of Western Ontario for undergrad

specifically because I could do my degree there through the Faculty of Medicine rather than

the Faculty of Science, making it the closest thing to a “pre-med” undergraduate program in

Canada at the time. My parents and I agreed that attending a private high school instead of

our local Scarborough high school would greatly increase my odds of getting to med school

and so my father increasingly took his construction cleaning company on the road to the

United States in the 90s so that we could afford tuition at one of the cheapest of Toronto

private schools, taking advantage of lucrative government contracts to clean the plethora of

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supermax prisons that began popping up across the nation like weeds during this time. It

was soon clear that I needed a part-time job in order to help out with school tuition (and for

spending money of course—I was a teenager after all), and so I got a job filing results at the

busy family practice in midtown Toronto run by four women GPs who all did low risk

obstetrical care. Not only did it pay better than a grocery store, but I could also learn things

there and lock down my reference letters for medical school before I even got to

undergrad—and from four members of the faculty of Medicine at the University of Toronto

no less.

The four doctors I worked for all knew about my dream of becoming a doctor and

encouraged this in me, teaching me about things during downtime between patients. As

staffed turned over I was promoted to secretary, working there part-time during the school

year and full time during the summer, even returning to the position from UWO during for

my first two summers of undergrad. The doctors taught me to administer flu shots to help

deal with the deluge of patients during flu season, and would explain abnormal results to

me—what they might indicate, what further studies they required, and various treatment

options. One took me incognito in scrubs as their “student” to see deliveries and C-Sections

up close. I was with them through the summer of SARS and restocked their vaccines

following the blackout. When a locum filling in for a doctor on mat leave commented that I

would breeze through medical school and residency right into my own practice, I prided

myself on my focus and my preparation, on how strategic I had been.

I recount all of these awkwardly personal details in order to make clear both the

magnitude with which my encounter Fausto-Sterling, Kessler, Crouch, and Foucault in that

casually chosen elective disrupted my life plans and how deeply unprepared for it I was. In

his 2011 book chapter “Intersex Treatment and the Promise of Trauma,” intersex scholar

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Iain Morland challenges the common critique that intersex clinical management is traumatic

by targeting the identification of trauma with the unintentional failure to do something.

These critiques generally argue that intersex management in general, and genital

normalization in particular, unintentionally traumatize the intersexed patient both physically

and psychologically, and thus fail to avoid the trauma that purportedly awaits them as an

individual with ambiguous genitalia. Instead, Morland draws on sociologist Kai Erikson’s

articulation of individual trauma as “a blow to the psyche that breaks through one’s defenses

so suddenly and with such brutal force that one cannot react to it effectively” to forward a

definition of trauma as something that suddenly and permanently changes an individual “in a

way that forecloses the possibility of conscious reaction and contemplation” (qtd. in

Morland, 2011, p. 158-160). Trauma, according to Morland, overwhelms; our inability to

react to it effectively leaves us forever changed and forecloses certain ways of living and

being in the world. Equipped with this new definition, Morland elegantly argues that intersex

clinical management “specifically in its aim to construct gender, [is] traumatic by design”

[emphasis added]; its goal to “fix” the intersex child in one gender and foreclose ways of

gendered living (p. 158). This is why sex assignment must be done in infancy, while children

are still considered malleable and unable to react, and thus still traumatize-able with regards to

gender.

Though I did not realize it at the time, this first encounter with these authors and the

critiques they raised was traumatic according to Morland’s definition, for not only was I

unequipped to react to the critiques they raised, I can now look back on that time and see

that it was the moment when certain possible futures and ways of living in the world became

impossible for me—most importantly, those futures in which I went to medical school and

became a physician. Externally, my response to this literature and to the critiques of the

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science, ethics, and politics of the medical management of intersex conditions it raised was

fairly indistinguishable from that of the rest of my classmates: I was horrified by the

heteronormativity of the treatment model; by the lack of evidence supporting it; by the

blatantly unethical performance of medically unnecessary genital normalizing surgeries on

those unable to consent for the sake of “society” and the fiction of dimorphic sex; and by

the legacy of physicians withholding information and outright lying to patients and their

surrogates these authors detailed. Further, I was unsettled by the short excerpts of the History

of Sexuality, Volume One we read and the questions it raised for me about medicine’s

objectivity and beneficence.

I am sure that it is only because I intended to join the ranks of those being critiqued

in these readings that I remained preoccupied with intersex after the class moved on to the

next topic on the syllabus. I think that at first I was motivated by a desire to, if not prove

these authors wrong, then at least establish a hidden complexity to the issue: there must be

more to this story that they are missing. I’m sure that I hoped to redeem medicine for myself

in some way, prove that the science couldn’t, in fact, be that bad, that our practices couldn’t,

in fact, be so baseless and that clinicians could not, in fact, be so unreflective and engage in

such obviously unethical behavior. As I progressed through the remainder of my

Microbiology and Immunology Degree, intersex stayed with me and continued to emerge as

a theme throughout my studies (for example, I did my major research project for my class

on the Biochemistry of Genetic Disease on the intersex condition, Congenital Adrenal

Hyperplasia). I also began to take more philosophy courses—as many as I could, really.

When I was advised that the conditions of my BMSc program would not allow me to double

major, I took a heavy course load, such that by the time I finished my degree in

8

Microbiology and Immunology, I had enough philosophy credits to complete my BA in the

area in one more year (which I did).

The more engaged with philosophy I became, the more I researched intersex

conditions and their management, and (perhaps most importantly) the more Foucault I read,

the more alienated I became from my dream of going to medical school. To put it bluntly,

the idea started to really creep me out. I had begun to reinterpret and reframe some of my

past experiences with medicine in terms of my own medicalization as a patient, and that of

those close to me, as a patient’s advocate and proxy decision-maker (my father signed a set

of uniquely designed documents waiving his rights to confidentiality and granting me the

ability to act as his proxy decision-maker without the necessity of a formal competency

assessment when I was 22), and as an employee who worked for six years in a family

practice. Most importantly, I had begun to reflect on the patients with intersex conditions

who had come through the practice and the way in which they and their families had been

managed. My research along with these reflections had disturbed much of what I thought I

understood about medicine and its role in society. That is, it challenged what I thought I

knew about what medicine was about in terms of the roles it played in society and the effects

it had both society and individuals. Thus, by the time I had finished my undergraduate

degrees, I found myself at something of a loss. It was suddenly time to for me to write the

MCAT and apply to medical school and do the thing that my whole life had supposedly been

leading up to, and I found myself feeling uncertain about and wary of a future in medicine in

a way that I never had before, and could never have imagined even three years earlier. This

unease was only compounded by the fact that I had initially been interested in reproductive

medicine and embryology and realized now I could end up as a specialist called upon to

manage intersex patients prenatally.

9

Having never really considered any other possible futures, I had no idea what to do

next. Some of my professors at UWO—most notably Samantha Brennan, Tracy Isaacs,

Helen Fielding, and Carolyn McLeod—encouraged me to consider graduate school in

philosophy, so that I might continue to pursue my research and concerns about intersex

conditions. In all honesty, I took their advice and enrolled in the MA program in philosophy

at UWO not because I was sold in any way on the idea of professional philosophy as a

career, or because I felt like I had found my “true calling.” It simply seemed like a productive

way to spend a year while I figured out what to do “for real.” Completing my MA, however,

only left me feeling further adrift; the courses I took and the research I did only served to

put me even further off a future in medicine. Moreover, as the child of working-class parents

neither of whom advanced beyond secondary school (and one of whom never completed

elementary school), being an academic in general, let alone a philosopher, wasn’t anywhere

on my radar. Finding myself with three degrees at 25 and unsure of what to do next, I

decided to take a year off and was lucky enough to be offered two year-long courses to teach

at UWO, experiences I enjoyed far more than I expected. During this time, Tracy, Carolyn,

Helen, and in particular Sam, encouraged me to consider seriously a career in philosophy and

to apply to the University of Alberta to work with Cressida Heyes, the Canada Research

Chair in Philosophy of Gender and Sexuality. I submitted to their coercion largely because I

really enjoyed Cressida’s work; I knew I wasn’t quite done learning, thinking, and writing

about intersex and medicine more generally; and frankly, I still wasn’t sure what else I was

going to do if I didn’t go to med school and I didn’t want to leave Canada. The PhD

program in Philosophy at the University of Alberta was the only one to which I applied.

10

From Intersex to DSD

During my MA (2006-2008) and the early years of my PhD (2008-2011) I was fairly

busy working on fulfilling my degree requirements and the majority of my focus during that

time was on coursework and comprehensive exams. As a result, I didn’t keep up to date with

scholarship on intersex and news out of the intersex activist community in quite the same

way I had during my undergraduate years. By the time I began my dissertation research in

earnest, it was as though the universe I had been busy preparing myself to enter had been

flipped upside down, or had lost gravity. The feminist academic and intersex activist critiques

that had challenged me out of my life plans and inspired me into new ones had given way to

the Consensus Statement and its Disorders of Sex Development (DSD) nomenclature, the

dissolution of the Intersex Society of North America (ISNA), and arguments from former

critics of the pathologization of intersex conditions that used Foucault in order to argue for

their “repathologization.” It was like I had entered a type of academic slumber in the age of

intersex and woken in the age of DSD.

Like many, I was shocked to learn about the adoption of the Consensus Statement

and the DSD nomenclature, as well as the ISNA’s role in its production and their

subsequent dissolution and reformation as the Accord Alliance. I was appalled by the

endorsement of the DSD nomenclature and treatment model by the very same intersex

activists and feminist academics like Cheryl Chase and Alice Dreger whose scholarship and

activism had inspired my own scholarship and academic reorientation. And, like many

others, I couldn’t quite make sense of what had motivated this about-face. Furthermore, I

was very concerned by the way in which those who were either involved in the adoption of

DSD or endorsing it were engaging—or more specifically, failing to engage—with what

seemed to me to be valid concerns about DSD that had been raised by critics, especially

11

those with intersex conditions. The internet was awash in vitriol for feminist academics without

diagnosed intersex conditions like myself for meddling in the lives and affairs of those with

them. And while I fully support not feeding the trolls (and indeed, much of this took the

form of offensive ad hominem attacks), many of those who were angry raised important

questions about the DSD treatment model and nomenclature: about the lack of transparency

surrounding not only the DSD treatment model’s development and adoption, but also the

ISNA’s role in it; about the ethical role feminist academics without diagnosed intersex

conditions can and should play within an activist movement and identity politics which does

not represent them; and most importantly about the potentially negative effects that the

DSD treatment model and its nomenclature might have for those with intersex conditions in

terms of intersex as an identity and identity politics.

Though I was deeply disturbed by the move to DSD, I want to acknowledge

explicitly that as a cisgendered woman without a diagnosed intersex condition, the move to

DSD has little direct effect on me, as I am spared the specific forms of normalization that

target those deemed intersex. This is not to say I am not affected by or implicated in the

shift to DSD. As sexed, gendered, and sexualized subjects under biopower, we are all

affected by the move to DSD insofar as it represents a shift in the contemporary

constitution of the heterosexual matrix and the particular ways in which normal and

abnormal sex, gender, and sexuality are conceptualized within those biomedical regimes of

truth that define them. However, as someone who has not been deemed abnormal with

regards to these norms of sex, gender, and sexuality—at least, not clinically, and not yet—

while I may be subjected to (and subjectivized via) these same norms, I do not bear the

brunt of their weight. It is important to me that I explicitly frame my concerns about, and

critical engagement with, the move to DSD as that of yet another feminist academic without

12

a diagnosed intersex condition—particularly given how uncomfortable with and deeply

problematic I find the way in which others such as myself have engaged with and been

complicit with this shift. For example, I was and remain deeply disturbed by feminist

academics without diagnosed intersex conditions policing the boundaries of intersex identity

in terms of who does or does not count as intersexed, or denying the existence of an intersex

identity in the face of those who identify as such—even if for strategic reasons and with the

best of intentions.

Finally, like many, I was heartbroken when it became clear that this change in

nomenclature and treatment model had done nothing to change medical practice regarding

the performance of medically unnecessary genital normalizing surgeries on infants and

children: as far as we know, they continue to be performed on infants and children unable to

consent as frequently as before (Karkazis, 2009, p. 133 and pp. 156-161; Feder, 2014, p.

140). Admittedly, tracking the performance of these surgeries on intersex patients is difficult

given that there is no specific registry either nationally or internationally (Karkazis, 2009, p.

23). That being said, it is generally accepted within the literature that physicians continue to

see medically unnecessary genital normalization as an essential component of intersex

management, and that it continues to be performed as frequently post-DSD as it was pre-

DSD. Due to the lack of hard stats that a registry or formal tracking system might generate,

we are forced to rely on the assertions of clinicians practically engaged in intersex

management, and such evidence has begun to accumulate. Feder (2014) concluded that the

frequency with which genital normalizing surgeries are performed had continued unabated

under DSD on the basis of interviews with 12 pediatric specialists in intersex care performed

between 2010-2011. This finding confirms those of sociologist Georgiann Davis on the basis

of sixty-five in-depth interviews she performed between October 2008 and April 2011 with

13

medical intersex experts, individuals with intersex conditions and parents of intersex

children. Fascinatingly, Davis found that despite the fact that physicians were more hesitant

regarding surgery since the publication of the Consensus Statement—with one physician she

interviewed imploring her colleagues to please “[not] do surgery”—“medically unnecessary

surgical interventions continue . . . even after the publication of the professional stance

against such practice” (Davis & Murphy, 2013, p. 138). Even physicians working in clinical

contexts they identified as “progressive” emphasized that surgical practice had not changed

post-DSD, with one of Davis’ interviewees remarking that “surgical intervention is still quite

common, even in a relatively enlightened place like this one” (p. 137). This final point echoes

my own experiences with clinicians engaged in intersex management. In late 2013 and early

2014, I had the opportunity to present two Pediatric Grand Rounds sessions at the

University of Alberta Hospital on the clinical and ethical issues associated with intersex

management with a pediatric urologist who performs feminizing and masculinizing surgeries.

This urologist generally saw himself as “progressive” (particularly in comparison to his father

and grandfather, who had also been pediatric urologists) because he acknowledged that in

many cases there had been no clear “right choice” with regards to sex assignment. In these

cases, the urologist would acknowledge this uncertainty to the parents and let them decide

whether they wanted a boy or a girl, performing the normalizing surgeries of their choice.

While not doing surgery—or, “doing nothing”—is likely presented as an option, the sense I

got from our conversations was that it was never a serious one. The assumption remained

that some surgery (or surgeries) would necessarily be done—it was really just a question of

which surgeries.

Thus, in addition to taking up the science, ethics, and politics underwriting the DSD

treatment model for intersex conditions, this dissertation also takes—much to my surprise—

14

the form of a critique of the arguments of some of those very same feminist academics who

inspired me to give up my dream of medical school in order to keep researching and writing

about intersex. In fact, though one goal of this project is to provide theoretical resources for

those who might desire to use them in order to resist the oppression experienced by intersex

people (medical or otherwise), I am writing here to a specific literature (and set of actions)

undertaken by other feminist academics without diagnosed intersex conditions like myself.

Indeed, whatever concerns and/or outrage over DSD I have are necessarily defined with

regards to my position as a cisgendered woman and feminist microbiologist turned

philosopher. Thus, I found myself deeply troubled not only by the arguments offered by

these individuals in favor of DSD, but also by their failure to acknowledge seriously and

respond to critics of their arguments as well as their practical involvement in DSD’s

adoption and in intersex activism as an identity politics movement more generally. In

particular, I remain deeply concerned by those arguments in favor of DSD that turn on the

denial of an intersex identity and intersex community in the face of individuals who identify

as such—even as a strategic move, fuelled by the best of intentions. Not only does this strike

me as deeply problematic politically, it also fails to take into account the differential positions

of privilege between feminist academics without diagnosed intersex conditions and those

with them. Subsequently, while I engage with arguments made by these academics about

intersex both as a term and as an identity, I offer no positive arguments in favor of either,

nor do I make any specific prescriptions regarding what intersex people or activists should

or should not do. Rather, my intention here is to contribute a critical voice to a particular

literature with the kind of scholarly and political care required in light of the impact this

literature can and historically has had for those individuals whom it takes up. Furthermore,

this strikes me as the most this project can be as one lacking primary research such that

15

intersex (and trans*) voices are themselves absent. This is not to minimize the breadth or

depth of this project as a critical contribution to the literature, but merely to make clear the

specific political and theoretical context out of which it emerges—including its limitations—

which constitute and contour its horizon of possibilities as a critical, theoretical, political,

and ethical academic engagement.

As a philosophical project examining the DSD treatment model for intersex

conditions that draws upon a variety of different literatures in multiple disciplines, this

dissertation has obvious implications for scholars of intersex in the humanities and social

sciences and for health care professionals engaged in intersex management. It also has less

obvious implications for those thinking and working in areas beyond this literature—most

notably for feminist theorists, philosophers of science (especially philosophers of biology

and philosophers of medicine), and bioethicists.

The history of intersex clinical management and its pivotal role in generating gender

as a category distinct from sex is likely well known to any scholar interested in sex or gender

in general. I update this history with an analysis of the way in which sex and gender are

constituted in the DSD treatment model, outlining the nosological and practical ways in

which it continues the project first set out by John Money through the Optimal Gender of

Rearing (OGR) treatment model of securing cisgendered futures for intersex infants and

thus, of producing cisgendered lives. One effect of the move to DSD has been the

emergence of a gap within the literature critically examining the DSD treatment model,

particularly with regards to the science underwriting it in terms of both the quality/kinds of

scientific evidence it invokes, and the theories of gender and sex development it appeals to.

Critical feminist engagement with the science underwriting OGR was a critical aspect of

early activist and academic critiques of intersex management, yet is suspiciously absent under

16

DSD. I argue this lacuna has emerged in the aftermath of DSD because by strategically

endorsing a biomedical model of intersex conditions specifically as disorders, those activists

and academics who did so reauthorized medical authority over these physical states such that

the science—that is, the biosocial model of gender development and the epistemic reliability

of the data supporting it—fell out of their purview. The critical philosophical analysis I

provide of both the DSD treatment model and its supporting scientific evidence base fill this

conspicuous gap in the literature and thus represent some of this project’s most important

contributions for scholarship on intersex, as well as sex, gender, and sexuality more

generally.

In the course of this critical, feminist study of the science underwriting DSD, I also

provide the first clear account of its pathology in terms of cisgendered function, referring to

the function the assemblage of physical sex characteristics is taken to perform in terms of

providing a stable ground for predictions regarding an individual’s future gender, with

gender referring to not only gender identity, but also gendered behavior and non-sexual

preferences or desires. Despite both the history of academic and activist work critiquing the

identification of intersex conditions as pathologies, and their reclassification specifically as

disorders, we remain without a clinical account of or justification for their identification as

such. By outlining one through examination of the nosological and practical aims of the

DSD treatment model, I provide another necessary piece for discussions regarding the ethics

and politics of intersex management. Though medical evidence—including evidence

regarding the nature of the pathology in question—is not sufficient for ethical medical

practice or decision-making, it is necessary for it (Borry, Schotsmans, & Dierickx, 2006). Not

only might we think it unethical to engage in the treatment indicated by our evidence base

(for example, because we lack informed consent), but further, the nature of the pathology

17

can also itself determine ethical medical practice, such as in cases where failure to treat can

result in death. Thus, the unique account of the pathology of intersex conditions in terms of

cisgendered function that I introduce fills a gap in the literature that has gone largely

unrecognized.

Beyond this, I provide unique arguments emphasizing the uniquely bureaucratic nature

of both intersex conditions and gender dysphoria as pathologies of cisgendered function

under biopower via bureaucratic forms of government. Administrative demands such as

those requiring individuals be sorted in terms of sex on legal identification or those limiting

access to health care on the basis of diagnosis are ways in which particular individuals are

made live while others are let die under biopower. These arguments are thus of interest to

scholars interested in the constitution and government of individuals as members of sexed

and gendered populations, as well as locating bureaucratic practices via which we might

more effectively resist that government.

The critical analysis I provide of DSD as a system of nomenclature will be of interest

to philosophers of science, biology, and medicine interested in questions regarding the goals

and abilities of our nosological systems, as well as their relationship to knowledge production

in the form of clinical research. My review of the clinical evidence and model of gender

development that the DSD treatment model appeals to, as well as the account of the

pathology of intersex conditions that I forward will also be of interest to these scholars. Not

only will this discussion review important epistemological problems facing evidence-based

medicine in general, I will further identify the unique epistemological problems facing

research studying the model of gender development appealed to by the DSD treatment

model—brain organization theory—and conclude that as a result of these problems,

clinicians in this area will never have the kind of evidence base upon which

18

recommendations could be justifiably made. Moreover, after reviewing contemporary

biomedical definitions of both mental and physical pathology, I provide a critique of the

dominant biomedical account of pathology—Christopher Boorse’s Biostatistical Theory of

Disease—that has implications for not only our identification of intersex and gender

dysphoria as pathologies, but for our identification of pathologies in general. Finally, through

my Foucauldian analysis of these issues, I emphasize the importance of taking into account

the historical, political, and social context of scientific knowledge production and its

technological use when reviewing them in terms of traditional topics in these fields like

evidence, study design and natural kinds.

This work probably has the most obvious implications for bioethical discussions

regarding the medical management of both intersex conditions and gender dysphoria,

particularly in children. First and foremost, I add my voice to the chorus of those calling for

a moratorium on the performance of unnecessary genital normalizing surgeries on intersex

infants, as well as on the treatment of trans* kids with so-called “conversion therapies”

which—like childhood management of intersex—aims at securing a cisgendered future for

the affected patient, and thus at the production of cisgendered lives. I agree with those who

have been arguing since the early 1990s that the use of such medically unnecessary

interventions on those unable to consent constitutes a gross violation of their right to

autonomy (as well as their right to bodily integrity in the case of the intersex child)—a very

widely recognized bioethical principle (Faden, Beauchamp, & King, 2004, p. 5). Indeed, the

intransigency of intersex management practices is fairly shocking in light of the clear

violation to autonomy they constitute, let alone the anecdotal evidence available indicating

their potential to cause harms (and thus, to constitute malfeasance). The fact that “physicians

have treated intersex in ways that defy most conventional understandings of ethical medical

19

practice” is the reason that Feder calls them “disorders like no other” (Feder, 2009, pp. 237,

238).

I go on, however, to provide a series of novel arguments grounding both this

moratorium and access to gender-confirming interventions for all those capable of providing

informed consent that desire them. Indeed, though autonomy is enough from a bioethical

perspective to ground my argument for a moratorium—given its status as one of the four

principles of North American bioethics emerging in Beauchamp and Childress’s 1985 book

Principles of Biomedical Ethics (in addition to beneficence, non-malfeasance, and justice)—

though perhaps not for my argument regarding ensuring access to care (depending on one’s

point of view) I am nonetheless suspicious of traditional conceptions of autonomy and the

rights-based discourse via which it is invoked. Following Dean Spade (2011), I argue that

rights-based discourse or initiatives problematically appeal to a sovereign conception of

power as deductive rather than a Foucauldian account of biopower as productive. Indeed, I

argue that focusing exclusively on autonomy and the right to it obscures the ways in which

biopower functions and the forms of subjectification, normalization and governmentality via

which particular lives are made live while others are let die – all of which have bioethical

significance. Thus, rather than relying on traditional bioethical or autonomy-based

arguments, I justify these two claims through appeal to a Foucauldian conception of ethics

and of the possibilities for freedom available to the subject within the context of biopower.

Further, on the basis of these accounts, I argue that both the DSD nomenclature and

Gender Dysphoria be jettisoned as diagnoses and that those institutional bureaucracies

which administer medical knowledge/power be challenged and radically reconstructed so

that those who can provide informed consent can access gender-confirmation in the absence

of pathology.

20

In Chapter One, “From Politicized Intersex Activism and Feminist Critique to

Disorders of Sex Development,” I begin with a review of the intimately entangled histories

of medicine, feminist scholarship and intersex activism out of and against which the DSD

treatment model emerged in 2006, only to be quickly and universally adopted by clinical

experts in intersex care internationally. After detailing both reactions to the DSD treatment

model among clinicians, intersex persons and feminist academics, as well as various critiques

of the DSD treatment model that have been raised, I conclude this chapter by laying out the

four most philosophically rigorous arguments that have been offered in favor of it. In a

sense, this chapter serves to orient the reader with regards to both the why and the how of the

move to DSD—that is, it makes clear both what motivated former critics to endorse the

“repathologization” of intersex conditions as DSDs (and thus, why they did), and the

arguments by which they got there.

In Chapter Two, “Diagnosing the Failure of DSD: Medical Power/Knowledge and

the Fictitious Unity of Sex, Gender and Sexuality,” I outline an argument for the failure of

the DSD treatment model as a strategy meant to bring about a reduction in the performance

of genital normalizing surgeries on intersex infants and children. Specifically, I argue that

those who endorsed a biomedical model of intersex conditions as disorders of sex

development were forced to commit not only to a nature/culture binary, but also to further

binaries which follow from it, in particular sex/gender and impairment/disability.

Commitment to these binaries has multiple problematic effects, the most important of

which are the obfuscation of the larger histories of biopower and of medicine out of which

the medical management of intersex conditions first emerged in the 1950s via John Money’s

Optimal Gender of Rearing (OGR) Treatment Model, and commitment to a juridico-

deductive model of power. I then move on in the remainder of Chapter Two to outline these

21

specific histories in order to resituate the DSD treatment model and intersex management in

general with regards to them. I ultimately conclude that those theoretical and activist

interventions which hope to improve the lives of those with intersex conditions must

employ analyses that begin from a rejection of the nature/culture binary; that recognize the

place of intersex management with regards to the larger history of biopower and the

production of gender; and finally, that employ an understanding of power which, unlike a

juridico-deductive account, better represents the productive ways in which interrelated

networks of knowledge/power actually function. In the remaining three chapters of this

dissertation, I examine the DSD treatment model employing just these kinds of analyses.

In Chapter Three, “The Disordering of Sex Development and the (Re)Production of

Cisgendered Lives,” I turn to the DSD treatment model, beginning with an examination of

the nosological shift from the intersex system of nomenclature to the DSD system of

nomenclature before moving on to look at the way in which the pathology of intersex

conditions are constituted via clinical practices. By focusing in particular on the few ways in

which practice has changed under DSD, I argue that the aim of intersex management under

DSD is the same as it was under OGR—specifically, securing a cisgendered future for the

intersex infant, and thus the production of cisgendered life. Further, sex remains “gender all

along” under DSD with the sex of intersex infants “fixed” on the basis of appeals to brain

organization theory and the notion of a hormonally and socially mediated “brain gender.” As

a result, I argue that the pathology of the intersex patient is one that is constituted in terms

of cisgendered function. Further, I argue that when a cisgendered future cannot be secured

for the intersex patient, medicine turns its efforts towards the production of a future which

can pass as cisgendered, through the use of puberty blockers such as Lupron. Puberty

blockers prevent the development of secondary sex characters and facilitate the production

22

of lives that appear to be cisgendered (even if they are not), by limiting those possible futures

where one is visibly or “readably” trans*.

In Chapter Four, “Securing Cisgendered Lives: A Critical Analysis of the

Pathologization of Gender Variance,” I reconstruct and then critique the most compelling

philosophical answers to the question that clinicians tacitly believe has a self-evident

response: Is being gender variant or non-cisgendered a pathology? Clinical evidence (or lack

thereof) regarding the nature of a pathology, its prognosis and the various methods for

treating it are necessary, but insufficient conditions for ethical medical practice and decision-

making. This is particularly true where those unable to provide informed consent are

concerned, such as infants or children. Indeed, in cases where failure to treat might result in

death, bioethicists agree that health care professionals are morally obligated to care for those

unable to provide informed consent (and sometimes against the wishes of their legal proxy

decision-makers, such as in the case of Jehovah Witness children and blood transfusions).

Thus, while the nature of pathologies of cisgendered function cannot determine ethical

clinical practice, it clearly plays a role in such a determination. After drawing on the work of

philosopher of biology and critical disability scholar Ron Amundson in order to critique

Boorse’s account of pathology, I argue that any attempt to ground the pathologization of

intersex conditions as physical pathologies is untenable. Subsequently, I turn to examine the

pathologization of gender variance as a mental disorder within the Diagnostic and Statistical

Manual (DSM), from the introduction of Transsexualism in DSM-III (1980) until the

reclassification of Gender Identity Disorder as Gender Dysphoria in DSM-V (2013). I

conclude in this chapter that pathologies of cisgendered function and the three elements of

the heterosexual matrix that make these pathologies possible—sex, gender and sexuality—

are socially constituted entities that function primarily at the level of the bureaucratic administration

23

of medical knowledge/power to justify the submission of particular populations to various forms

of gender-confirming normalization, or to withhold those forms of normalization from

other populations. Importantly, the way these pathologies function bureaucratically cashes

out in ethically distinct ways for adolescents and adults who are able to provide informed

consent and children who are not. While adolescents and adults able to provide infomed

consent are granted the authority regarding their gender such that they initiate the gender-

confirming process insofar as it is their distress and social impairment that gender

normalization aims to treat, children treated with medical efforts to produce cisgendered

lives are denied this authority. Rather, in these latter cases, we initate normalization in order

to relieve the distress and social impairment experienced by society as a result of the

apparent mis-alignment between the child’s sex and their gender, as enacted through

clinicians and proxy decision-makers. Indeed, this must be the case, for it is not clear that

children—and in particular, intersex infants—have either a gender with regards to which

they might be dysphoric, or an understanding of their body, let alone their body as sexed, to

which gender incongruence must be indexed. Thus, I conclude that in the case of those

unable to consent, the gender dysphoria and social impairment that medical efforts to secure

cisgendered futures treat are those of health care professionals and guardians as the

individuals for whom the child’s gender incongruence actually registers. These cases then,

might be best described as cases of gender dysphoria by proxy, rather than pediatric intersex

conditions or gender dysphoria in childhood.

Finally, in Chapter Five, “Ethics, Medical Knowledge/Power and Politics After

DSD,” I provide a series of uniquely Foucauldian arguments for a number of specific

normative recommendations: the above-mentioned moratorium on all medical efforts to

secure cisgendered futures for those unable to provide informed consent, and that those

24

who desire access to medical forms of gender-confirming normalization be granted access to

it in a timely and affordable manner. Some might question my ability to issue such normative

claims within a Foucauldian framework, and argue that such an act is in tension with the use

of the framework itself. Indeed, the liberatory potential (or lack thereof) of Foucauldian

analysis is seen by many to be its most problematic characteristic. While genealogy is very

useful for revealing the discursive and non-discursive constitution of the subject, there is not

an outside of power for Foucault—no natural, or prediscurisve, autonomous subject to

whom we might return—and thus, no clear possibility for an account of liberation. To issue

new norms is to merely redeploy power and call that redeployment liberatory.

I follow Oksala (2011), however, in her optimism regarding the possibilites for

freedom available to the Foucauldian subject under biopower, in the domains of ethics,

language and the body. I justify my two primary prescriptive claims by cashing out ethical

medical knowledge/power in light of both Foucault’s account of ethics as the relationship of

oneself to the self via which one forms themself as an “ethical subject,” and his prescriptive

claims regarding the exercise of freedom in this domain in terms of critically and self-

reflexively engaging in practices of the self in ways that stretch the limits of subjectivity and

intelligibility (Foucault, 1990b, p. 28). After cashing out the possibilities for freedom

available to the Foucauldian subject in terms of the necessarily excessive nature of both

language and lived experience such that neither is completely determined by their

constitutive elements, I go on to justify three further prescriptive claims: that both the DSD

nomenclature and the diagnosis of Gender Dysphoria be jettisoned; that those institutional

bureaucracies which administer medical knowledge/power be radically reconstructed so that

those who can provide informed consent can access gender-confirmation in the absence of

pathology (and so that sex/gender designations cannot function as gatekeepers to care more

25

generally); and finally, that political theory and resistance focus on those institutional

bureaucracies responsible for the government of gender—and subsequently, for the

maldistribution of life chances for those with pathologies of cisgendered function—and their

radical reconstruction.

26

Chapter One: From Politicized Intersex Activism and Feminist Critique to Disorders of Sex

Development

I. Introduction In 2006, the American and European pediatric endocrine associations published a

special article in three medical journals titled “Consensus Statement on Management of

Intersex Disorders” (“Consensus Statement” hereafter) proposing the first official revision

in both the treatment model and the system of nomenclature for these conditions since the

1950s. The publication of this document—and its rapid adoption by clinicians engaged in

intersex management in North America, Europe, and beyond—sent off a shockwave within

the intimately entangled communities of both feminist academics engaged in intersex

scholarship and intersex activists of such magnitude that both groups were left fractured in

its aftermath, heatedly dividing themselves in terms of whether they were for or against this

new standard of care.

Unofficially lumped under the umbrella category “intersex” since the mid-20th

century, intersex conditions are those congenital (usually endocrine) conditions that may give

rise to atypical development of bodily markers of sex such that an individual’s status as male

or female is called into question.1 Traditionally, intersex conditions have been identified with

the birth of a child with ambiguous genitalia. However, many individuals with intersex

conditions are neither born with nor develop ambiguous genitalia, and further, many others

1 While the term intersex has been in use since the mid-twentieth century and adopted by activists and academics in the late 1980s/early 1990s as an alternative to the historically stigmatizing “hermaphrodite,” “intersex” was never formally adopted by the medical community (Reis, 2009). Those with variations of congenital sex anatomy continued to receive diagnoses such as “male pseudohermaphrodite” or “true hermaphrodite” (ostensibly) until the adoption of “disorder of sex development” in 2006. For historical summaries of the nomenclature see Feder and Karkazis, 2008 and Reis, 2009.

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will not be diagnosed until adolescence or adulthood, if at all. At least 20 different

etiologically distinct intersex conditions have been identified, each with its own unique

presentation and associated health risks or sequelae. However, the frequency of individual

intersex conditions and of intersex conditions generally remains subject to debate (Adam et

al., 2012, p. 1339). 1-2 in every 1,000 infants born are treated with cosmetic surgery to

normalize the appearance of their genitals; however, current best estimates hold that

somewhere between 1.7%-2.3% of the general population have atypical chromosomal,

gonadal and anatomic sex (Blackless et al., 2000). Yet beyond this, many predict that as

technological advances increase, including our knowledge about the “molecular genetics of

gonadal development and neurological sex differences,” the number of those who count as

having bodies that are neither typically male nor female will greatly increase (Rosario, 2009,

p. 278; Clune-Taylor, 2010). Generally speaking, the presence or development of atypical

markers of sex that define intersex conditions are a side effect or symptom of the congenital

condition that gives rise to it and are, generally speaking, not pathological in and of

themselves (barring, for example, impairment to one’s ability to void and excrete for those

with variations in genital development).

The Consensus Statement cites progress made in “diagnosis, surgical techniques,

understanding psychosocial issues, and [in] recognizing and accepting the place of patient

advocacy” as motivating the revision in treatment model and nomenclature it lays out (Lee et

al., 2006, e488). Situating the change in nomenclature specifically as responding to “advances

in identification of molecular genetic causes of abnormal sex with heightened awareness of

ethical issues and patient advocacy concerns,” the Consensus Statement proposed that from

then on, the intersex system of nomenclature, which utilized the diagnoses “male

pseudohermaphrodite,” “female pseduohermaphrodite,” and “true hermaphrodite” grouped

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under the umbrella category “intersex” be replaced by the new “Disorder of Sex

Development” or DSD system of nomenclature. Under this new system, “Disorder of Sex

Development” would come to replace intersex as the umbrella category for those

“congenital conditions in which development of chromosomal, gonadal, or anatomic sex is

atypical” and individuals would now receive a DSD specific diagnosis referencing an

individual’s total chromosome number, their specific “sex chromosome” makeup and, in

some cases, gonadal makeup, such as 46 XY testicular DSD (see table 1) (Lee et al., 2006,

e488-e489).2

Table 1. Nomenclature Revision Proposed by the “Consensus Statement on Management of Intersex

Disorders”

Previous Revised Intersex DSD Male pseudohermaphrodite, undervirilization of an XY male, or undermasculinization of an XY male3

46 XY DSD4

2 I have placed the term “sex chromosome” in quotation marks as a gesture towards the literature critiquing the continued identification of the X chromosome as the female chromosome given the existence of reliable scientific evidence since as early as 2001 of the necessary role the X chromosome plays in both male and female development. For an excellent review of the history of sex chromosome research and the association of the X chromosome with “femaleness” as an instance of how the gendering of objects for biological study can shape the production of biological knowledge, see Richardson, 2013. 3 The Consensus Statement is listing all synonyms that have been used within the literature for these bodily states. Chronologically, “male pseudohermaphrodite” is the first of these terms, having been introduced as a diagnosis in 1876 by Theodor Albrecht Klebs. Due to the stigma associated with the term “hermaphrodite,” practice unofficially shifted to the use of diagnoses in terms of “masculinization” or “undermasculinization” (For in-depth discussion of the history of this nomenclature, see Reis, 2009; Feder and Karkazis, 2008). While I acknowledge the plethora of heterosexist problems associated with the use of masculinized and undermasculinized—and indeed, the arguments presented in this dissertation aim specifically at laying bare the problems with attributing masculinity or feminity to any particular set of physical traits and the sexism underwriting such attributions—I personally find the invocation of a binary in terms of virility, with its connotation of sexual potency, to be more troubling than one which invokes masculinity or femininity. Further, I find the use of masculinization/undermasculinization to be far more

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Female pseudohermaphrodite, overvirilization of an XX female, or masculinization of an XX female

46 XX DSD

True hermaphrodite Ovotesticular DSD XX male or XX sex reversal 46 XX testicular DSD XY sex reversal 46 XY complete gonadal

dysgensis Note. From Peter A. Lee et al., “Consensus Statement on Management of Intersex Disorders,” Pediatrics 118.2, 2006, e489, table 1.

As with the old system of nomenclature, the new system of diagnoses occurs in

conjunction with condition-specific diagnoses such as congenital adrenal hyperplasia (CAH)

or complete androgen insensitivity syndrome (CAIS), such that an individual will receive a

final diagnosis such as 46 XY testicular DSD (CAIS) (Lee et al., 2006, tables 1 & 2). The

Consensus Statement further outlines an optimal model of investigation and management of

DSDs that emphasizes sex assignment only following expert evaluation in newborns;

evaluation and long term management by an experienced multidisciplinary team (one ideally

comprised of “pediatric subspecialists in endocrinology, surgery, and/or urology,

psychology/psychiatry, gynecology, genetic, neonatology, and, if available, social work,

nursing, and medical ethics”); open communication and shared decision making with both

patients and their families; and that concerns of patients and families be addressed and

respected in confidence (Lee et al., 2006, e490). Furthermore, biology or biological factors

would gain a new centrality in determining optimal sex assignment in contrast to the more

social constructionist recommendations of the Optimum Gender of Rearing (OGR)

treatment model for intersex conditions that this model was intended to replace (Lee et al.,

representative of the anxieties underwriting contemporary intersex clinical management strategies insofar as they aim at precluding the existence of masculine girls and inadequately masculine boys. Thus, I limit myself to the use of the terms masculinized and undermasculinized in the rest of this dissertation. 4 The Consensus Statement places a comma between the chromosome number and type (e.g. 46, XY DSD), however, this convention is inconsistently followed in the literature. I exclude it, however, wanted to flag that this does not cohere to the nomenclature as it was first introduced.

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2006, e491). For example, while under the old model infants with XY chromosomes and

phalluses that were either absent (aphallia) or smaller than average (microphallus) would

have received a female sex assignment via vaginoplasty, gonadectomy, and hormone therapy,

under the DSD model, these infants will receive a male assignment in accordance with their

chromosomal makeup (For a table summarizing the etiology, frequency of, and treatment

recommendations for the most common intersex conditions under both the OGR and DSD

treatment models, see Appendix A).

The DSD treatment model proposed by the Consensus Statement has been taken up

by the medical community in a swift and universal manner. By 2010 (a mere four years after

the Consensus Statement’s publication), British pediatrician, Consensus Statement co-author,

and internationally renowned expert in intersex management Ieuan A. Hughes would

proclaim the OGR treatment model’s 50 year reign as the paradigm for treating intersex

conditions ended.5 In a 2010 review of the literature in the field as well as a recent survey of

practitioners at 60 European medical centers engaged in intersex management, Hughes

found the adoption of the DSD nomenclature and implementation of the treatment protocol

in both clinical practice and medical and/or scientific literature to have been so rapid and so

near total that he characterized it as “a quiet revolution in medicine” (Hughes, 2010, p. 160).

Despite the apparently “revolutionary” uptake of the DSD treatment model by the

medical community, the generally positive reception both the Consensus Statement and the

DSD treatment model have received in this community have not been mirrored in others.

Rather, the publication of the Consensus Statement, the process and politics out of which

the document emerged, and clinical adoption of the DSD treatment model itself has sparked

a particularly bitter and divisive controversy within two intimately entangled and often 5 By DSD treatment model, I refer both to the DSD system of nomenclature and the revised treatment model for intersex conditions laid out within the Consensus Statement.

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overlapping communities: the intersex activist community and the feminist academy. It is

true that the majority of the debate that has emerged within (and between) these two

communities in the aftermath of the Consensus Statement’s publication has focused on the

pathologizing nature of the term “disorder of sex development.” Nonetheless, it is reductive

to characterize either that which has been achieved through the adoption of the Consensus

Statement’s nosological and clinical recommendations, or the resultant debate, as centrally an

issue of nomenclature. Rather, these debates, as they have been hashed out and reflected on,

in and through various online message boards, academic journals and edited volumes,

organizational newsletters, and social media forums, have raised questions. These concern

the relationship between political theory and political activism; the place and limits of

feminist theory in practice; how (and why) we define pathology; health identity politics (and

the place of allies within identity politics); speaking for others; authority (both medical and

otherwise); as well the limits of intelligibility in terms of both sex and gender; and how

certain lives are constituted as unliveable.

Both the visceral nature of the controversy sparked by the clinical adoption of the

DSD treatment model and its primary localization within the intersex activist and feminist

academic communities are a function of the history out of and against which the Consensus

Statement emerged in 2006. Indeed, the Consensus Statement’s publication is undeniably a

watershed moment in the deeply, and at times ambivalently, entangled histories of both

groups. Accordingly, the history of the Consensus Statement and the nosological

reclassification and revised treatment model it introduces is not merely a story about

scientific, clinical and or empirical “progress”—though it is at times that.6 It is at the same

6 I place the term ‘progress’ in quotations here for, as I will make clear in the course of this dissertation, not only has little changed between the two treatment models, but further, it is

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time, like the histories of many models for naming, identifying and treating diseases, a story

about politics, practices, identities, organizations, institutions, contingent events, and

particular alliances.

In this first chapter, I provide a brief overview of the histories of medicine, of the

feminist academy, and of the intersex activist movement that constitute the conditions of

possibility for the emergence of the Consensus Statement in 2006 and the controversy that

erupted in its aftermath. In the next section, subtitled “Intersex, (Optimum) Gender (of

Rearing) and the Feminist Academy,” I offer a short history of the system of nomenclature

and treatment model the Consensus Statement was developed to replace—the OGR

treatment model for intersex conditions developed by Dr. John Money and his colleagues

Joan and John Hampson at Johns Hopkins Medical Center during the 1950s. I will also

begin to sketch the history of what is probably best termed Anglo-liberal feminist academic

engagement with intersex, beginning with second wave feminist theoretical use of the

medical management of intersex conditions and Money’s “hermaphroditic” research to

challenge biological determinism, moving through third wave feminist troubling of the

sex/gender binary (and through it, the nature/culture binary) and ending with feminist

critiques of the science, ethics, and politics of pathologization and medical treatment of

intersex bodies.

In section three, “From the Intersex Society of North America and ‘Hermaphrodites

with Attitude’ to the Accord Alliance and ‘Disorders of Sex Development’,” I turn to the

history of the largest and most influential organization of the intersex activist movement

within the global north—Intersex Society of North America or ISNA—beginning with its

foundation by Cheryl Chase/Bo Laurent in 1993 and ending with its dissolution and unclear that what has changed should be regarded as “progressive” or that it is even clear what progress might mean with regards to this treatment model.

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reformation as the Accord Alliance in 2008. Being a philosopher rather than a historian, I

construct this overview using existing primary historical research, and highlight those events,

individuals, and arguments that influenced the ISNA’s formation and eventual emergence at

the forefront of intersex activism; the complex relationship between the ISNA and the

feminist academy that continued to grow throughout the 1990s and 2000s; and the ISNA’s

controversial trajectory in practical and political orientation, which lead them from

“politicizing a pan-intersexual identity” and demanding the demedicalization of intersex

conditions to endorsing the DSD treatment model and reforming as an apolitical lobby

group. After surveying reaction to the DSD treatment model and the ISNA’s role in its

development among intersex activists and feminist academic in section four, I move on in

section five to lay out the most philosophically rigorous arguments that have been offered in

favour of the move to DSD. Thus, by the time I conclude this chapter, it will be clear both

why former critics of the pathologization of intersex conditions came to endorse their

repathologization as DSDs and how they argued for this apparent about face.

II. (Inter)Sex, (Optimal) Gender (of Rearing) and the Feminist Academy

The treatment model and system of nomenclature laid out by the European and

American pediatric endocrine associations in the Consensus Statement was created as a

replacement for the standards of care and diagnostic classification that had been in place

since they were first published in the Bulletin of the Johns Hopkins Hospital (“the Bulletin”

hereafter) between 1955 and 1957 (Germon, 2009, p. 24). These treatment standards—

known as the OGR treatment model—were created by John Money and his colleagues Joan

and John Hampson at Johns Hopkins Medical Center in Baltimore during the early 1950s

and were based on Money’s theory of gender acquisition that he had begun developing

during his doctoral studies at Harvard between 1947 and 1952. By the time the Consensus

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Statement was published in 2006, the ethics, politics, and science underlying the OGR

treatment model had been the subject of almost 20 years of intense, often scathing critique.

The OGR treatment model, along with the tools it utilized to assess patient outcome,

was based on the theory of gender acquisition John Money began to develop in his doctoral

dissertation titled “Hermaphroditism: An Inquiry into the Nature of a Human Paradox”—

though at the time, he had yet to use the word gender (Germon, 2009, p. 18; Money, 1952;

Rubin, 2012, p. 894). After graduating with his Ph.D. in clinical psychology in 1952 from the

Department of Social Relations at Harvard University, Money took up the position of co-

director of the newly established Psycho-Hormonal Research Unit at Johns Hopkins Medical

Center with psychiatrist Joan Hampson. On the basis of their work with intersex patients

through this research unit housed in the department of endocrinology, Money and Hampson

(along with her husband John Hampson), further expanded and refined Money’s theory of

gender acquisition, introducing the concept of gender as human attribute distinct from sex in

the process.

Money first introduced his theory of gender in a 1955 article that appeared as part of

a series of articles by Money and/or his colleagues in The Bulletin between 1955 and 1957,

laying out their treatment model for intersex conditions, its theoretical foundation, and tools

for assessment. Money’s theory of gender as first articulated in this article,

“Hermaphroditism, Gender and Precocity in Hyperadrenocorticism: Psychologic Findings,”

encapsulated what we today would distinguish as gender identity, gender role or behavior,

and sexual orientation (Money, 1995, p. 18; Rubin, 2009, p. 892). Money has often been

reductively portrayed as strict social constructionist—and maligned for this view (Diamond,

1965; Zucker, 1996; for an in depth review of challenges to Money’s position as a social

constructionist, see Karkazis, 2008, pp. 63-80). In fact, however, he was—at least initially—

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an interactionist in a manner revolutionary for his day. In the first chapter of his 1995 book

Gendermaps: Social Constructionism, Feminism and Sexosophical History titled “Lexical History and

the Constructionist Ideology of Gender” Money writes

The first step was to abandon the unitary definition of sex as male or female, and to

formulate a list of five prenatally determined variables of sex that hermaphroditic

data had shown could be independent of one another, namely, chromosomal sex,

gonadal sex, internal and external morphologic sex and hormonal sex (prenatal and

pubertal), to which was added a sixth postnatal determinant, the sex of assignment

and rearing. The seventh place at the end of this list was an unnamed blank that

craved a name. After several burnings of the midnight oil I arrived at the term,

gender role, conceptualized jointly as private in imagery and ideation, and public in

manifestation and expression (Money, p. 21).

The development of gender role, for Money, was a “multistage process that relied on

multiple attributes of biological sex and social variables but that could not be said to derive

from these exclusively” (Karkazis, 2008, p. 53). However, for a large portion (95%) of the

hermaphroditic patients studied by Money and the Hampsons at Johns Hopkins, gender

identity corresponded to sex of rearing (Rubin, 2009, p. 888). This led Money and the

Hampsons to identify sex of rearing as being of particular importance to gender role

development—perhaps even more so than biological variables given the stability of gender

role once learned (Karkazis, 2008, pp. 52-54).

Given the importance of sex of rearing to the Money and the Hampsons’ account of

gender role development, their OGR treatment model for intersex patients recommended

that infants born with intersex diagnoses receive a sex assignment by 18 months of age

(ideally within the first few weeks of life) and that those infants whose intersex conditions

36

gave rise to ambiguous genitalia receive normalizing genital surgery (Karkazis, 2008, p. 55).

Money and the Hampsons saw normalized genitalia as key to normal gender role

development; genitals that did not match a child’s assigned sex would impede the child’s

identification with their assigned sex and gender and, further, ambiguous genitalia might

cause parents to “waver in their commitment to raising the child in the assigned gender”

(Karkazis, 2008, pp. 57-58). Certainty—both the parents’ and the child’s—regarding the

child’s sex assignment played an integral role in Money and the Hampsons’ account of

normal gender role development and subsequently in the OGR treatment model. Thus, the

model in practice fostered what intersex philosopher Morgan Holmes refers to as a “genital

determinism” with regards to sex and gender, despite Money and the Hampsons’ more

complex, interactionist view in theory (Holmes, 2008, p. 69). Further, it meant that even

though Money and the Hampsons often provided ambivalent (and at times contradictory)

recommendations with regards to disclosure, in practice, patient and parental certainty

regarding the patient’s “true sex” was often secured by failures to disclose and at times,

outright deception on behalf of both physicians and parents (Karkazis, 2008, p. 60).

The first sustained critiques of the OGR model emerged between 1985 and 2000 in

the works of feminist academics such as biologist Anne Fausto-Sterling, sociologist Suzanne

J. Kessler, and historian of science Alice D. Dreger. 7 Academic feminists’ first non-critical

engagement with the issue of intersex bodies and their medical management came in 1972

with the publication of Anne Oakley’s monograph Sex, Gender and Society. As David Rubin

(2012), Germon (2009), and Hausman (1995) all note, the sex/gender distinction adopted 7 While Fausto-Sterling’s (1985) critique of the OGR model in Myths of gender: Biological theories and men and women predates the publication of Suzanne J. Kessler’s (1990) article “Medical construction of gender: Case management of intersexed infants” in the feminist journal Signs by five years, Kessler’s article, which is described by Dreger and Herndon (2009) as “the first publication to provide a sustained feminist critique of the OGR model” is generally identified as the first of its kind (p. 203; Fausto-Sterling, 1985, pp. 133-41).

37

and employed here first by Oakley and later by many other second-wave feminists in the

1970s to challenge biological determinism, comes from Money by way of psychoanalyst

Robert Stoller. Oakley draws on Money and the Hampsons’ studies showing a high rate of

correspondence between sex of rearing and gender identity to forward a social

constructionist theory of gender (Oakley, 1972; Rubin, 2012, p. 888). Though Oakley’s

interpretation is something of a reductio of Money’s actual theory of gender role and its

development (though perhaps, not of his practice regarding it), it was nonetheless eminently

helpful to her and feminists of her era. If sex was natural and gender cultural, then gender

roles and inequalities were contingent and changeable. The bodies and genders of so-called

hermaphrodites provided early feminist academics with tools to undermine the biological

determinism underwriting women’s oppression. Importantly, however, as Rubin (2012)

points out, this logic kept intact both the naturalness of sex dimorphism and the abnormality

inherent in intersex states (p. 888).

By the late 1980s and early 1990s, feminists would come to challenge the purported

naturalness of sex that their predecessors had accepted, most notably Judith Butler in her

groundbreaking 1990 book Gender Trouble. In it, Butler too considers the example of intersex,

but this time to critique the sex/gender distinction and the assumption of sex as the raw

bodily difference upon which the social meaning of gender is inscribed that it entailed. Butler

engages Foucault to argue that prediscursive (or natural) binary sex is a fiction, that sex is as

culturally constructed as binary gender and that the “production of sex as the prediscursive

ought to be understood as the effect of the apparatus of cultural construction designated by

gender” (p. 11). That is, gender must, she writes

designate the very apparatus of production whereby the sexes themselves are

established. As a result, gender is not to culture what sex is to nature; gender is also

38

the discursive/cultural means by which “sexed nature” or “a natural sex” is produced

and established as “prediscursive,” prior to culture, a politically neutral surface on

which [emphasis in original] culture acts. (1999, p. 11).

By “casting the duality of sex in a prediscursive domain” the “internal stability and binary

frame for sex is effectively secured” (p. 11). However, the need to “fix” the sex of those with

intersex conditions as male or female by way of their “optimal gender of rearing” throws

into relief both the fiction of binary sex and its production in the service (and as an effect of)

gender. Thus, Butler concludes that sex is, by definition, “gender all along” (p. 8).

Furthermore, though Butler emphasizes the centrality of gender to identity, cultural

intelligibility and personhood, she nonetheless troubles the notion of gender as “an abiding

substance,” arguing there is no “gendered self” beyond that which is “produced by the

regulation of attributes along culturally established lines of coherence” (pp. 32-33). Thus,

gender, writes Butler,

is not a noun, but neither is it a set of free-floating attributes, for we have seen that

the substantive effect of gender is performatively produced and compelled by the

regulatory practices of gender coherence. Hence, within the inherited discourse of

the metaphysics of substance, gender proves to be performative—that is,

constituting the identity it is purported to be. In this sense, gender is always a doing,

though not by a subject who might be said to preexist the deed (p. 33).

Thus, Butler rejects the notion of a gendered self for a definition of gender as “the

repeated stylization of the body, a set of repeated acts within a highly rigid regulatory

frame that congeal over time to produce the appearance of substance, of a natural sort

of being” (p. 44).

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Despite gender’s failure to exist beyond its expression, the gender identity that

“is performatively constituted by the very ‘expressions’ that are said to be its results,”

remains essential to cultural intelligibility and personhood (p. 33). The stabilizer of

binary sex, gender is thus not only the condition of possibility for heterosexuality, but

further, its production by Money in the 1950s is what establishes the particular

configuration of the heterosexual matrix within which we currently operate—a tripartite

system of sex-gender-sexuality. The heterosexual matrix functions as a grid through

which those performatively constituted genders that “in some sense institute and

maintain relations of coherence and continuity among sex, gender, sexual practice, and

desire” are rendered “intelligible,” while those that fail to institute and maintain these

relations are not (p. 23). Butler writes,

the spectres of discontinuity and incoherence, themselves unthinkable only in

relation to existing norms of continuity and coherence, are constantly prohibited and

produced by the very laws that seek to establish causal or expressive lines of

connection among biological sex, culturally constituted genders, and the

“expression” or “effect” of both in the manifestation of sexual desire through

practice (p. 23).

The production of intelligible or normal gender (and sex and sexuality) is thus

simultaneously the production of abnormal gender (and sex and sexuality); that is, by

fixing sex through gender, sex is constituted as the stable ground with regards to which

gender can misalign. Thus, Money’s fixing of sex via gender simultanously produced

cis-aligned gender or cisgender as normal and made trans* gender, or gender variance

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pathological.8 Furthermore, the fact that identity is “assured through the stabilizing

concepts of sex, gender and sexuality,” such that one doesn’t simply have a gender, but

is a gender, means that those who fail to cohere with gender norms, argues Butler, call

into question “the very notion of ‘the person’” (p. 23).

Following Butler’s germinal theoretical excavation of sex as “by definition . . . gender

all along,” feminist academics like Suzanne J. Kessler (1990) Anne Fausto-Sterling (1993,

2000), and Sharon Preves (2002) began to critique in detail both the medical management of

bodies that failed to accord with biomedical definitions of male and female and the

production of scientific knowledge that underwrote that management. Their critiques of the

OGR treatment model focused on the performance of medically unnecessary genital

normalizing surgeries on infants and children who did not and/or could not consent—often

at the expense of later sexual function. They called into question the presumed naturalness

of physical sex dimorphism that constituted intersex conditions as pathologies requiring

treatment, as well as the heterosexism underlying treatment recommendations and outcome

analyses that valued “aggressiveness and sexual potency for boys and passiveness and

reproductive/sexual-receptive potential for girls” and according to which homo or

bisexuality and instability of gender identification constituted bad outcomes (Dreger &

Herndon, 2009, p. 204). Furthermore, these critiques questioned the positioning of the

medical treatment of intersex conditions as exceptional, legitimating practices that routinely

violated bioethical principles of respect for autonomy, beneficence, non-malfeasance, and

justice. These early critiques by feminist academics like Fausto-Sterling and Kessler provided

the theoretical foundation for the emergence of an international intersex activist movement

at the forefront of which stood the Intersex Society of North America (ISNA). 8 I use trans* to refer both to those who identify as transsexual and those who identify as transgender.

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III. From the Intersex Society of North America and “Hermaphrodites with Attitude” to the Accord Alliance and Disorders of Sex Development

In a 1993 letter to the editor of The Sciences responding to Fausto-Sterling’s (1993)

germinal article “The Five Sexes: Why Male and Female Are Not Enough,” self-identified

“intersexual” Cheryl Chase announced the foundation of the Intersex Society of North

America (Chase, 1993). Though not the first organization to form around the issue of

intersex conditions (the Turner Syndrome Society formed in 1987 and the Androgen

Insensitivity Syndrome Support Groups formed in 1988), the ISNA was, undeniably, the

first intersex activist group, drawing its energy and rhetoric not only from feminist academic

challenges to the OGR model (as well as their challenges to biological determinism, sexism,

and medical authority more generally) and queer theory, but also from social movements for

women’s rights, civil rights, and gay liberation. In contrast to other groups’ focus on peer

support, the ISNA (and many of the groups that formed in its aftermath) took a page from

the gay liberation movement reclaiming and politicizing the term intersex (and to a lesser

extent, hermaphrodite), such that “by the late 1990s ‘intersex’ had become an identity and a

social movement claimed by activists as a legitimate variation in human biology and

anatomy, rather than a form of disease” (Holmes, 2011, p. 392). Intersex activists often

engaged in a two-pronged strategy, attacking the OGR treatment model that had caused

them psychological and physical harm on the one hand, and taking part in a larger social and

political project on the other, one that argued for “acceptance, dignity and human treatment

for those with gender-atypical bodies in an effort to challenge ideology, practices and

consciousness” regarding gender, sex and sexuality (Karkazis, 2008, p. 8). Their position was

based fundamentally on the notion that

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although certain intersex-related conditions (such as salt-[wasting] associated with

Congenital Adrenal Hyperplasia) can be life threatening and thus may require

intervention, intersexuality itself is not pathological and thus does not require

medical treatment (Spurgas, 2009, p. 99).

It was because intersex conditions generally, and ambiguous genitalia in particular,

threatened the social norms about sex, gender, and sexuality that structure so much of daily

existence, that they were pathologized, they argued, and this pathologization justified their

treatment with unsuccessful, experimental surgeries and secrecy, causing immense physical

and psychological harm. Preves (2005) writes that the ISNA was fairly successful in not only

increasing public awareness of intersex conditions, but of also “personalizing intersex” by

drawing attention to personal stories of individual harms done under the OGR treatment

model, a process which provided “nonintersexed individuals a human connection and

political context within which to understand these stories of medicalization, secrecy and

shame” (p. 271). By 1995 individuals’ stories were being featured in the popular press, as well

as in college textbooks and other educational forums, and by 1996, features on the intersex

activist movement (and the ISNA in particular) ran in The New York Times, the Utne Reader

and Out magazine (Preves, 2005, p. 271).

The ISNA’s successes in garnering media attention—particularly by way of direct

action protests under the name “Hermaphrodites with Attitude”—forced physicians to

respond to their claims about the physical and psychological harms done under the OGR

treatment model. In collaboration with the group Transsexual Menace, the ISNA held the

world’s first protest by intersex activists at the 1996 meeting of the American Academy of

Pediatrics (AAP), after learning that the “U.S. Congress passed legislation prohibiting

clitorectomy that was drafted in a way that tried to avoid protecting intersexed children”

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(Hegarty & Chase, 2000, p. 127). Their protest pressured the AAP into releasing its first ever

position statement on the medical management of intersex conditions to the press, stating

that “the Academy is deeply concerned about the emotional, cognitive and body image

development of intersexuals and believes that successful early genital surgery minimizes

these issues ” (as sited in Chase, 1998b, p. 202).9 As Preves notes, LGBT and mainstream

media coverage of intersex conditions and harms done under the OGR treatment only

increased following the publication of follow-up studies on David Reimer in 1997, putting

even more pressure on physicians and health care professionals to clarify their position on

intersex treatment (Preves, 2005, p. 277).

Born Bruce Reimer in 1965, David—an identical twin—lost his penis during a

botched circumcision and subsequently was treated by OGR architect John Money. Money

recommended that Bruce be surgically and socially reassigned as female, arguing that his lack

of a penis would prevent normal male gender role development. This surgical and social

reassignment was done at 22 months of age and, as Preves writes, “Money and colleagues

used this surgical mishap and sex reassignment to test the impact of gender socialization by

rearing a male child as female and using his genetic identical twin [Brian] as an empirical

control” (Preves, 2005, p. 273). Known in medical literature as John/Joan, Money and his

colleagues published multiple articles reporting that Bruce/John’s reassignment as

Brenda/Joan had been an unqualified success, providing proof not only the claim that sex of

rearing was the primary determinant of gender role and identity acquisition, but also for the

OGR treatment model for intersex conditions based on this claim. In 1997, biologist Milton

9 The 1996 protest of the AAP is often described as the moment or event that “put the ISNA on the map,” however as Karkazis notes in Fixing Sex, Chase was interestingly not at the protest itself. Rather Chase “…worked very closely with the “transsexual” activist Riki Wilchins and members of Transexual Menace to “get bodies” for the protest” (Karkazis, 2008, p. 317, n10; See also Valentine & Wilchins 1997 for a firsthand account of the protest).

44

Diamond and psychiatrist Keith Sigmundson’s article “Sex Reassignment at Birth: Long-

Term Review and Clinical Implications” revealed that, counter to Money and his colleagues’

claims, John’s reassignment as Joan never “took,” and that Brenda had transitioned to male

at the age of 14 (Diamond & Sigmundson, 1997). While David Reimer had never been

diagnosed with an intersex condition, the publicity surrounding his case “opened the door

for intersex rights activists to tell their stories and influence medical reform” (Preves, 2005,

p. 274). Furthermore, David’s story served to discredit both Money and the premise upon

which the OGR treatment model was founded; that sex of rearing, bolstered by surgical

assignment, was the key to development of a happy heteronormative child. As Chase writes,

by the time Reimer’s story broke in 1997, she and the ISNA were ready to capitalize on this

publicity.

By 1997, we had a large community of adult intersexuals who would speak publicly;

we have a few parents willing to speak about their experiences and could rebut

doctors’ assertions that “things are so much better now.” We had sexologists,

sociologist, psychotherapists, historians, and even one or two surgeons and ethicists

on our side. We were in a good position to extract from the media the story we

wanted: A story about us and how intersexuals are fighting for social change, a story

avoiding painting intersexuals as “Other,” as freak, as victim. Just as all of these

pieces fell into place, a stroke of good luck came to us. Sex researcher Milton

Diamond publicized the outcome of what has become known as the “John/Joan”

story. . . . We took advantage of the press’s attention to the John/Joan story, making

them aware that intersex children are treated daily with the same medical arrogance,

mutilating surgery and willful deception imposed on John (Chase, 1997, p. 25).

45

Multiple stories covering the controversy over Reimer’s case, and subsequently the

medical management of intersex conditions, appeared in 1997. Many featured interviews

with physicians and pointed to “tensions within medicine about how best to frame and

respond to intersexuality” (Preves, 2005, p. 277). The debate that emerged among physicians

was, as Preves recounts, strikingly polarized, with a vocal minority of “physicians and

others,” like Diamond and Sigmundson, challenging the dominant paradigm of

“normalization” on the one hand, and those who supported the OGR treatment model on

the other (p. 277). Those who challenged the dominant paradigm of normalization, however,

often framed it not as a question of whether or not to do surgery, but when to do it (pp. 277-

278). Media coverage of the harms done to those with intersex conditions under the OGR

treatment model, bolstered by the outing of John’s failure to become Joan, put intense

pressure on physicians to respond to their critics and in many cases, attenuate their support

of the OGR model. Physicians began to claim that they were far less eager in their surgical

recommendations and by 2000, those physicians engaged in the treatment of intersex

conditions found their field to be in a state of “deep and divisive crisis” driven there by

intersex activists’ “chorus of demands” (Preves, 2005, p. 282; Karkazis, 2008, p. 3). That

same year Ian Aaronson, a pediatric endocrinologist at the Medical University of South

Carolina convened the North American Task Force on Intersex (NATFI) “in response to

the increasing debate over medical sex assignment in order to reevaluate medical care for

children with ambiguous sexual anatomy,” a committee which included not only feminist

social psychologist and author of Lessons from the Intersexed Suzanne J. Kessler, but also ISNA

executive director Cheryl Chase (Preves, 2003, pp. 150-151).

Due in large part to their successes in raising public consciousness about intersex

conditions and challenging the medical establishment, the ISNA grew a great deal during the

46

years following the publication of the John/Joan case, not only in size, but also—and most

importantly—in terms of profile, legitimacy and thus, political clout. As the ISNA began to

garner recognition as “a credible voice in the debate over” the treatment of intersex

conditions, new opportunities for collaboration with physicians began to arise (Preves, 2005,

p. 271). The organization had initially established itself as a radical queer activist group, more

interested in the “complete demedicalization of the intersex body and on a reclamation of

intersex via explicit and strategic solidarity among people of diverse embodiments, genders

and sexualities” than in any (even strategic) collaboration with physicians. However, as its

profile grew, members of the ISNA started being invited to speak at those very same

meetings of medical associations they had once been relegated to protesting (for example, in

addition to her membership on the committee of the above mentioned NATFI, Chase gave

a keynote address at the May 2000 meeting of the Lawson Wilkins Pediatric Endocrine

Society) (Preves, 2005, p. 271; Spurgas, 2009, pp. 99-100). As opportunities for the ISNA

(and those associated with it) to effect change at the level of the treatment model began to

arise, so too did concerns about the group’s ability to take advantage successfully of those

opportunities in light of its history of politicized queer activism. Though the ISNA and other

intersex activist groups were at least moderately effective at challenging the surgical

“correction” protocol, their influence was inconsistent at best and highly dependent on

whether particular physicians were willing to listen to their critiques and take them seriously,

or dismissed them as being an “angry,” “militant” minority of “zealots” (Preves, 2005, pp.

277-278). In her 1998 GLQ article “Hermaphrodites with Attitude: Mapping the Emergence

of Intersex Political Activism,” Chase acknowledged the difficulty the ISNA had in changing

medical practice and the “deaf ear” medical specialists treating intersex had generally turned

to the ISNA’s appeals. Furthermore, though the ISNA had enjoyed a “central role in

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defining the intersex movement and its activities” due to its successes in publicizing the

plight of intersex individuals and challenging the medical establishment, its politically queer

nature had alienated it from other intersex groups from the start (particularly those peer

support groups for or run by parents of children with intersex conditions who, Preves

writes, often made in her discussions with them, “explicit efforts to sever associations

between intersex and GLBT issues”) (Preves, 2005, p. 264). Preves notes that both the

centrality of the ISNA to the intersex activist movement and the tension its undertaking a

queer identity politics had created were evident in the responses, or rather identifications,

interviewees gave during the course of her research in the late 1990s and in her experiences

as an academic called upon to discuss intersex. She writes,

While I was conducting interviews with members of various intersex support groups

in the later 1990s, several interviewees frequently identified themselves as non-ISNA

members with a sentiment of, “You know I am not part of that radical lobbying

group, right?” More recently, when I was asked to speak about my research at an

intersex support group’s annual conference, I was given a list of issues to avoid, lest I

present intersex as too political or too “queer” (read: “too ISNA”) and thus end up

alienating potential recruits of the group or their family members (Preves, 2005, pp.

263-264).

Though the group’s engagement in queer identity politics had long caused divisive

tension, once opportunities for collaboration with clinicians began to arise, the ISNA’s

politics, practices and, in particular, the queer and non-normative intersex identity that it had

articulated and around which it had organized, came to seem insurmountably problematic.

Underwriting intersex identity as activists had articulated it was a critique of the heterosexual

matrix (the presumed natural alignment of dimorphic sex with binary gender with

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heterosexuality) that was too radical, and subsequently antithetical to collaboration with

physicians and parents. Moreover, its constitution in opposition to dominant

heteronormative configurations of sexed and gendered bodies meant that those identified as

having intersex conditions were assumed to be queer in terms of their sex, gender or political

identity. This connotation troubled physicians, individuals with intersex conditions who did

not identify as queer, and, in particular, parents of affected children who were offended by

the implication that their children did not and would not have a clear, unambiguous,

heteronormative sex, gender, and sexual identity (Koyama, 2006). Furthermore, many within

the movement had begun to raise concerns about the co-optation and appropriation of

intersex as an identity by those within the trans* community and as a conceptual or

theoretical tool by academic feminists. For example, DSD-proponent, activist founder of

Intersex Initiative, and former ISNA intern Emi Koyama writes in her 2006 article, “From

‘Intersex’ to ‘DSD’: Toward a Queer Disability Politics of Gender”

The word ‘intersex’ began to attract individuals who are not necessarily intersex, but

feel that they might be, because they are queer or trans. Many of these people felt

that to be intersex meant a social and biological justification for being who they are,

as in it’s okay that you’re queer or trans because they were literally ‘born that way’

[sic]. This obviously clashes with the majority of people born with intersex

conditions, who despite their intersex bodies feel that they are perfectly ordinary

heterosexual, non-trans men and women (2006, para. 23).

The ISNA’s solution to this problem amounted to two simultaneous shifts. The first

was to reconceptualize intersex conditions—the issue around which the ISNA organized—

in a way that physicians would respond to, that is, in terms of their language of pathology.

The second was to jettison the queer-sociopolitical identity that had once been their focus—

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intersex—by distancing themselves from or eliminating all discussion of identity, gender, or

sexuality. Preves (2005) notes that soon after the extensive mainstream media coverage of

the Reimer case in 1997, new ways of articulating the “problem” of the treatment of intersex

conditions under the OGR model began to emerge, focusing specifically on issues of

informed consent, human rights, and children’s rights. However, externally apparent signs of

a shift or change in the organization’s practices and politics didn’t appear until 2001 when

the ISNA changed the title of its newsletter from “Hermaphrodites with Attitude” to the

“ISNA News” and the newsletter itself moved from featuring personal stories and humor to

“professional and organizational concerns such as financial reports, profiles of board

members, and the continued coverage of medical conferences and research” (Preves, 2005,

p. 262). Preves describes this change in the ISNA’s newsletter as mirroring an “overarching

frame realignment that has taken place within the movement, as activists and doctors have

begun working alongside one another for change, rather than against each other as political

adversaries.” (p. 262)

The political and practical transition undertaken by the ISNA has been characterized

in many ways, from being identified as a sign of progress and/or professionalization, to

“surprising” and “counterintuitive,” to a betrayal to those committed to the queer identity

politics movement it had spawned (Dreger & Herndon, 2009; Preves, 2005; Spurgas, 2009,

p. 100). Davidson (2009) describes the ISNA’s trajectory as moving from espousing a

revolutionary approach of “opposing medical discourse on intersex and the logic through

which it operates, for example by challenging the very language of ‘intersex’ conditions,” to

taking up what he calls an “evolutionary approach” of attempting to “alter how intersex is

medicalized . . . by working within the medical paradigm and through medical logic and

language to bring about eventual changes for individuals with intersex ‘conditions’”

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(Davidson, 2009, p. 64). Preves (2005), who did extensive field research at the organization’s

offices, describes the ISNA as leaving behind “an injustice frame characterized by personal

medical trauma,” and argues this “frame transformation was made even more complete”

with the resignation of Cheryl Chase as the organization’s executive director and the

appointment of “nonintersexed medical sociologist” Monica Casper in January 2003 (p. 262).

It was under Casper that the ISNA created a medical advisory board, and further

extend[ed] the intersex movement’s concerns to other movements and communities

such as those communities such as those focused on women’s health, disability

rights, children’s rights, sexual rights and reproductive rights. ISNA created a

strategic planning process in 2003 designed to reposition the organization vis-à-vis

these communities, while strengthening its relationship to the medical profession and

other health care providers (Preves, 2005, p. 284).

In a footnote to her 2008 book Fixing Sex: Intersex, Medical Authority and Lived

Experience, bioethicist Katrina Karkazis writes that during the 2000 NATFI meetings she

heard “the first push for changing the nomenclature . . . from Chase and Dreger” (p. 317, n

11; Preves, 2005, p. 279).10 However, the first time Chase and Dreger made their (and

ostensibly, the ISNA’s) desire and rationale for moving away from intersex to a pathology-

based taxonomy clear in a public way was in 2005 in the article “Changing the

Nomenclature/ Taxonomy for Intersex: A Scientific and Clinical Rationale” in the Journal of

Pediatric Endocrinology & Metabolism. The publication of this article, which Spurgas describes as

“the harbinger of a new highly medicalized model of intersex treatment, a model that would

focus on genetic and endocrinal etiologies for specific intersex comportments and which

10 Though Karkazis identifies both Chase and Alice Dreger (then chair of the board for the ISNA) as having been present at the 2000 meetings of NATFI, Dreger is not officially listed as a member of the group (Karkazis, 2008, p. 317, n11).

51

purported to ‘label the condition rather than the person,’” signaled the ISNA’s first official

endorsement of a not only a new highly medicalized treatment model for intersex

conditions, but also a reconceptualization of intersex conditions as pathologies (Spurgas,

2009, p. 101; Dreger, Chase, Sousa, Grupppuso, & Frader, 2005, p. 733).

In the article, Dreger, Chase, and three clinicians/researchers associated with the

ISNA’s medical advisory board argue for the clinical abandonment of the intersex system of

nomenclature, which uses gonadal makeup to diagnose individuals as male, female, or as

belonging to one of three “intersex” types: true hermaphrodite, male pseudo-hermaphrodite,

or female pseudo-hermaphrodite. The authors argue that the current system of

nomenclature is “illogical, outdated and harmful,” and review what they describe as its

scientific, clinical, and rhetorical shortcomings before suggesting the use of “specific

etiology-based diagnoses (such as AIS, 5α-reductase deficiency, etc.) organized under the

umbrella term “disorders of sexual differentiation” (Dreger, Chase, Sousa, Grupppuso, &

Frader, 2005, pp. 729, 733). Having been developed “approximately 125 years ago, before

the development of modern genetics and endocrinology, and well before the current

diagnostic techniques and scientific knowledge of sexual anatomy,” including the “discovery

and understanding of ‘sex chromosomes’,” the intersex system of nomenclature

“problematically privileges gonadal makeup as the primary or sole variable in diagnoses” (pp.

730-731). Presumably to illustrate the illogic of the current system, the authors stress the

failure of the current nomenclature to “carve the world at its joints,” as it were, prior to

reviewing the nomenclature’s scientific, clinical and rhetorical drawbacks in detail (p. 730).

This point, they write “is critical—the current taxonomy does not [emphasis in original]

represent a division into what philosophers of science call ‘natural kinds’. Nature does not

52

[emphasis in original] tell us the existing system is the one and only way to view sexual

anatomies” (p. 730).

This privileging of gonadal makeup, they argue, is problematic for two reasons. First, it

is “scientifically questionable” insofar as “scientists and clinicians now recognize that the

structure of gonads does not correlate simply with genotype, phenotype, physiology,

diagnosis or gender identity” such that “continu[ing] to use rhetoric suggesting that gonadal

anatomy is the most important marker or is a simple marker of sex type denies the full

breadth of our current scientific knowledge” (Dreger, Chase, Sousa, Grupppuso, & Frader,

2005, pp. 730-731). Second, the current system of nomenclature has multiple “clinical

shortcomings” insofar as it “provides little clinical help, often confusing and harming the

patient, and sometimes also the physician” (p. 730). Under the current system, individuals

can end up with diagnoses that can conflict with their sex or gender identity—for example,

an individual with Androgen Insensitivity Syndrome (AIS) may receive the diagnosis of male

pseudo-hermaphrodite as a result of having testes, yet identify as and appear to be an

unremarkably feminine woman. In order to avoid the distress these conflicts between

“supposed ‘sex’” and gender could cause for patients, physicians at times resorted to the

“now widely criticized” practice of withholding true diagnoses from patients and to early

childhood surgeries “to ‘resolve’ the conflict”—something “that patients (and then many

clinicians) later regretted” (pp. 731-732).

The authors move on to provide a list of four rhetorical problems they see as

plaguing the intersex system of nomenclature. First, the term hermaphrodite, on which the

intersex nomenclature is based, still conjures for many people a mythical figure who is both

male and female, in possession of two full sets of genitals and/or sex organs. This image not

only “frightens and confuses many non-professionals, including patients and their families,”

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it further may “attract the interest of a large number of people whose interest is based on a

sexual fetish and people who suffer from delusions about their own medical histories”—so

much so that “this unwanted attention can rise to a level that interferes with the work of

support groups and clinicians” (Dreger, Chase, Sousa, Grupppuso, & Frader, 2005, p. 732).

Second, conflicts between diagnosis and self-identified or presented gender can lead to

distress for patients, parents, and physicians. The authors stress that nomenclature can have

serious implications for the patient, writing that

Most patients with intersex conditions are confronted with social and sexual issues at

many developmental stages over the course of their lives; a patient’s understanding

of her condition will be strongly affected by labels she encounters in her own

medical record or in medical journals and texts (p. 732).

Third, they argue that the intersex system of nomenclature labels the person (i.e.,

male pseudohermaphrodite) rather than the condition (male pseudohermaphroditism).

Finally, they argue that “the division into ‘pseudo’ and ‘true’ forms of hermaphroditism

implies a hierarchy of authenticity, whereby one person has a fake form of intersex and

another a real form” (p. 732).

In the concluding section of the article, titled “Towards a New Taxonomy,” the

authors write that a new clinical approach to intersex “should aim to use methodologically

sound evidence to facilitate the development of healthy and happy patients” and state that

determining this new system of nomenclature “will depend on what patients and clinicians

decide they need” (Dreger, Chase, Sousa, Grupppuso, & Frader, 2005, p. 732). They do,

however, provide a list of suggestions for any new taxonomic system, like that it “should

enhance, but not complicate, the use of medical informatics in research and clinical

practice”; that it “should make clear that diagnosis does not simply dictate therapy”; and that

54

it “should recognize that diagnosis and taxonomy inform, but do not determine, gender

assignment and/or identity (thus, should avoid the words ‘male’ and ‘female’)” (p. 733).

Finally, they conclude by suggesting the use of specific etiology-based diagnoses under the

umbrella category “disorder of sexual differentiation,” arguing that “such an approach would

have the salutary effects of improving patient and physician understanding and reducing the

biases that are inherent in the use of the current language of ‘hermaphroditism’” (p. 733).

In October 2005, just few months after this article was published, Cheryl Chase and

intersex activist Barbara Thomas of the German group AIS XY-Frauen attended the

International Consensus Conference on Intersex hosted by the American Lawson Wilkins

Pediatric Endocrine Society and European Society for Pediatric Endocrinology in Chicago,

Ill (Lee et al., 2006, e497). At this meeting the working groups that later developed the

Consensus Statement were formed. The activists’ involvement in the document’s

production, however, has been described as limited at best and tokenistic at worst and this

exclusion is evident in the document’s recommendations regarding both nomenclature and

treatment (Karkazis, 2008, p. 3; Karkazis, personal communication, August 2010). Rather

than Dreger and Chase’s initial suggestion of “disorders of sexual differentiation,” the

Consensus Statement infamously reclassifed intersex conditions as “disorders of sex

development.”11 The authors of the Consensus Statement do admittedly come “closer than

any group of physicians before them in publicly advocating against sex assignment surgery at

birth,” limiting their recommendations to the performance of genital normalizing surgery by

experienced surgeons in “cases of severe virilization,” emphasizing functional outcomes over 11 In a 2007 blog post on her website, Alice Dreger writes regarding the nomenclature that “Disorders of Sexual Differentiation” was rejected by those “clinicians helping with the handbooks” because “different disciplines mean different things when they say ‘differentiation’”. She continues, “ I also heard about ‘disorders of sexual development.’ But ‘sexual’ seemed to mean ‘erotic,’ so we rolled that middle word back to ‘sex.’ (Dreger, 2007, para. 13)

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aesthetic and even cautioning that though “it is generally felt that surgery that is performed

for cosmetic reasons in the first year of life relieves parental distress and improves

attachment between the child and the parents; the systematic evidence for this belief is

lacking” (Spurgas, 2009, p. 103; Lee et al., 2006, e491). Surgery nonetheless remained central

to the treatment model. Karkazis notes that the idea that early, non-medically necessary

genital surgery was a necessary part of optimal care remained fairly entrenched within the

medical community, writing that not only did many of the physicians she interviewed for the

book see “early genital surgery as necessary, most surgical articles take for granted that

surgery will be performed (and hence simply describe how to do it) [and] opinions at

professional meetings appear to agree that surgery still makes for good care” (2008, p. 134).

In 2006, the ISNA electronically published The Handbook for Parents and The Clinical

Guidelines for the Management of Disorders of Sex Development in Childhood (The Clinical Guidelines

hereafter) both of which are attributed to the Consortium on the Management of Disorders

of Sex Development (the ISNA’s medical advisory board) and use the DSD nomenclature

almost exclusively. This was the last major initiative undertaken by the ISNA prior to its

quiet dissolution in 2008, via an open letter posted to their website. In the letter, the group

cites lingering public confusion over their goals such that they find themselves, as a group,

“hamstrung” in their ability to achieve these goals. Ostensibly as a result of their queer

political history they were taken by many to be advocating the extreme position that children

should not be assigned a sex or gender, or raised as a third/intermediate gender in

opposition to their true goal of achieving a moratorium on all medically unnecessary genital

normalizing surgery. In its place the ISNA left the Accord Alliance, a medical lobby group

dedicated to the promotion of “comprehensive and integrated approaches to care that

enhance the health and well-being of people and families affected by [Disorders of Sex

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Development] by fostering collaboration among all stakeholders,” which it identified as

parents, patients, and physicians (Accord Alliance, 2008). Notably, there is no mention of

the word intersex anywhere on the Accord Alliance’s website or its materials.

IV. Post-Intersex/DSD News of both the official revision in treatment model for what were now known as

disorders of sex development, as well as the ISNA’s involvement in the DSD treatment

model’s development and adoption came as a surprise to the majority of intersex adults (and

activists). As Karkazis writes, it wasn’t really until somewhere around the time that the DSD

guidelines were published online that “intersex adults began having an intense discussion

about the new nomenclature, especially concerning the term disorders of sex development” (2008,

p. 317, n11). Karkazis’s characterization of the discussion that began outside of the medical

community about the DSD treatment model as intense is something of an understatement;

as Jennifer Germon bluntly puts it in her 2009 book Gender: A Genealogy of an Idea, “when it

became apparent that the ISNA had driven the terminology change, all hell broke loose”

(Germon, 2009, p. 173). A few of those closely associated with the ISNA were aware of the

organization’s plans to transition into a medical lobby group fairly early on, leading some

associated with the group to found their own organizations in the early 2000s in order to fill

lacunae in the movement they saw created by the ISNA’s organizational evolution. The most

notable of these groups, which now make up the three most prominent intersex activist

organizations internationally, include politicized intersex activist group Intersex Initiative

Portland (IPDX) founded by former ISNA intern and communications director Emi

Koyama in 2000, the non-diagnosis-specific outreach, education and support focused Bodies

Like Ours (BLO) founded in 2002, and politicized activist group Organisation Intersex

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International (OII) founded in 2003 by Curtis Hinkle (which, at the time of writing, had

affiliates in 20 countries on six continents speaking 10 languages including Mandarin and

Arabic) (Preves, 2005, 264; OII, 2012). Officially these groups have split on their responses

to the DSD treatment model: Koyama has argued (albeit somewhat resignedly) in favor of

the DSD nomenclature (Koyama, 2006, 2008), while representatives of BLO and OII remain

critical of the nomenclature and of collaboration with physicians to varying degrees, with

OII holding the more critical position of the two.

The internet (and the various forms of electronic communication it has engendered)

has played a large role in the development and mobilization of the intersex activist

movement, acting as the primary site where activists recruit, network, and communicate and

affected individuals and their families access information and support beyond the clinic.

Undeniably, there were many—particularly physicians, parents, and individuals with intersex

conditions who identify as gender normative (and heterosexual)—who were very pleased

with the new treatment model and nomenclature. However, the majority of response online

to both the Consensus Statement and the ISNA’s involvement in its production was

overwhelmingly negative (even granting that one’s involvement in an intersex activist

organization and/or on their online message board might bias them towards a negative

response). For example, Peter Trinkl, chair of the board of directors of the organization

Bodies Like Ours stated that of those who had expressed an opinion on the subject via the

organization’s online “Intersex Community Forum,” “roughly 80-90% of the intersex people

. . . are against the DSD nomenclature” (Trinkl, 2008, para. 1).

The ISNA did attempt to deal with these concerns: in response to the increasingly

heated online debate over both the DSD nomenclature and the ISNA’s endorsement of it,

the group posted an article on its website in May 2006, explaining both their endorsement of

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the term and their adoption of it in their own communications beginning in 2005. The post,

titled “Why is ISNA using ‘DSD’?,” lists many of the same problems associated with the

term intersex mentioned in 2005’s “Changing the Nomenclature/Taxonomy for Intersex”

such as the overabundance of meaning the term has come to accrue and its tendency to label

the person rather than their condition. However, it takes pains to achieve something of a

middle ground on the issue of nomenclature, positioning the organization’s use of the term

as primarily pragmatic and acknowledging opposing viewpoints hosted on the ISNA’s own

website. In the post, Chase writes that since the organization’s incorporation in 1999, the

group has focused their efforts on achieving one of their longstanding “cherished goals”—

reforming medical care for children with intersex conditions (ISNA, 2006c, para. 1).12 The

term Disorders of Sex Development or DSD was far better suited to achieving this goal than

intersex as it was found to be “much less charged” than “intersex” when used in medical

contexts, making the group’s “message of patient-centered care much more accessible to

parents and doctors” alike (ISNA, 2006c, para. 2). The group’s aim in adopting and

endorsing DSD is not “to make intersex an entirely medical issue,” but rather “to meet them

[parents and doctors] where they are.” The article goes on to explicitly acknowledge that

“there is so much more to intersexuality than the medical context. ISNA certainly doesn’t

mean to tell intersex adults or support or activist groups what language they should use. If

‘intersex’ is working for you, by all means use it!” (ISNA, 2006c, para. 4). Further, the post

even encourages readers to “have a look at the wonderful essay . . . by Sherri Groveman

Morris” (founder of the Androgen Insensitivity Syndrome Support Group US and a former

member of ISNA’s board of directors) to which it links and which the ISNA hosts. In “DSD

12 This post is attributed, like many posts on the website, simply to the ISNA. However, in a 2007 blog post on her own website, Alice Dreger attributes the entry to Cheryl Chase (Dreger, 2007, para. 38).

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but intersex too: Shifting paradigms without abandoning roots,” Morris cautions the ISNA

against abandoning the term intersex as it “looks forward,” reminding them that

In supporting a change in terminology within the medical community, ISNA must

remain mindful that many of its prime constituents are adults who define themselves

using the term “intersex.” It would be a mistake to advocate that “intersex” be

replaced with “DSD” within such community, in the same way that people with a

variety of different conditions identify themselves using terms which may vary from

the terms employed by their health care providers (Morris, 2006, para 4.).

Despite this public acknowledgement of Morris’s warning, the ISNA did, in the end,

abandon intersex altogether. And as it became increasingly clear that the move towards DSD

was, for the ISNA, simultaneously a move away from intersex, many of those who had

initially supported the ISNA began to distance themselves from the organization, including

some of the very individuals who helped develop The Handbook for Parents and The Clinical

Guidelines (Karkazis, 2008, p. 317, n11). As Karkazis (2008) writes, “several individuals who

had helped contribute to the handbooks argued the new term medicalized and pathologized

intersex conditions and people” and of them, three had their objection to the term included

within the acknowledgements section of both documents (p. 317, n11). Esther Leidolf

explained her motive for having her objection to DSD noted for the record as such: “As an

intersex activist, educator and president of the MRKH Organization, I know many people

who are deeply hurt and troubled by being told they have a disorder and they do not want to

be part of a disorder movement” (Leidolf, 2006, para. 3).

It is unsurprising after so many years of activist and academic critiques calling specifically

for the demedicalization of intersex conditions that so much of the controversy that

emerged in the aftermath of the treatment model’s adoption focused specifically on the

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pathologizing nature of the nomenclature. Many affected individuals and their advocates

within both the academy and the activist community were angered specifically by the

adoption of the language of disorder, leading some to argue for alternative diagnoses that

carry a “non-stigmatizing, non-correction demanding” tone, such as “variations of sex

development” or “divergence of sex development” (Karkazis, 2008, p. 259; Reis, 2007, p.

541; Diamond & Beh, 2006). Critics argued that not only does DSD merely replace an

“already generic label”—intersex—in a more pathologizing manner, but further, that this

generic label is ultimately useless, given that the new nomenclature requires the use of

specific diagnoses (such as Congenital Adrenal Hyperplasia or Androgen Insensitivity

Syndrome) for disorders which already “are classified within current medical diagnostic

categories and [for which] the appropriate treatment is already established” (Alaniz, 2006,

para. 3; Torres, 2006, para. 5). For those sympathetic to the critiques of the medicalization of

intersex conditions and the general gender non-conformity that characterized the intersex

activist movement and the queer identity politics undertaken by the ISNA in its early years in

particular, the nomenclature’s adoption represents twin insults. First, the nomenclature itself

is experienced by some as pathologization of the self, an effacement or delegitimization of

their intersex identity. And second, the endorsement of the DSD treatment model by some

of those very same activists and academics previously critical of the pathologization of

intersex conditions—and further, their involvement in the treatment model’s adoption—

come “as a betrayal and an abandonment of what they regarded as the larger goal” (Karkazis,

2008, pp. 258-59). Online reaction to both the DSD nomenclature and the ISNA’s

endorsement of it became so heated at times that many of the critiques soon became

infamous for devolving into ad hominem arguments, taking the form of “vituperative

screeds against the integrity and motives of the nomenclature’s authors, as if an appropriate

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response to the bad feelings generated by disorders of sex development would be to make its

authors feel bad too” (Morland, 2012, p. 30).

While activists associated with the ISNA undeniably bore the brunt of the ire

generated by the adoption of the DSD treatment model, a notable portion of this disdain

was reserved specifically for feminist academics without diagnosed intersex conditions who

were both publicly endorsing DSD and who had previously argued for the depathologization

of intersex conditions—especially if they were either formally or informally associated with

the ISNA—like Alice Dreger, April Herndon, and Ellen K. Feder.13 As Spurgas writes, many

of

those who favor intersex [emphasis in original] over DSD resent what they consider

an apolitical (or reactionary) and assimilationist conspiracy among certain intersex

activists (many of whom are not intersex themselves) with members of the medical

establishment and a myopic focus on abolition of surgical treatment, without

considering the necessity of abolishing other types of unnecessary medical treatment

(Spurgas, 2009, p. 107).

Karkazis too notes the characterization of the controversy in terms of assimilation, writing,

the debate, which one person has referred to as a rift between assimilationists and

non-assimilationists, appears to be an inevitable result of ISNA becoming more

mainstream and has proven incredibly heated because it is deeply, achingly personal,

centering on who gets to define, determine and label the truth and authenticity of

one’s life (Karkazis, 2008, pp. 259-260).

13 While Herndon’s sole endorsement of the term came in Dreger and Herndon (2009), Dreger and Feder argued for its use in multiple publications (See Dreger, Chase, Sousa, Grupppuso, & Frader, 2005; Dreger, 2007; Feder, 2009a; Feder, 2009b; Feder & Karkazis, 2008).

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This was not the first time feminist academics without diagnosed intersex conditions

have been criticized for either their theoretical and pedagogical treatment of intersex issues

or for their involvement in intersex activism. Emi Koyama of IPDX has developed multiple

tools specifically for those without diagnosed intersex conditions teaching and/or writing

about intersex, all of which are available on the group’s website. In 2002’s “From Social

Construction to Social Justice: Transforming How We Teach about Intersexuality,” Koyama

and co-author Lisa Weasel provide specific “guidelines for teaching intersex issues” after

their survey of 24 scholars found that “intersex existence is understood and presented largely

as a scholarly object to be studied in order to deconstruct the notion of binary sexes (and

thus sexism and homophobia) rather than as a subject that has real-world implications for

real people” (Koyama & Weasel, 2002, p. 170). Some of their recommendations for those

teaching about intersex issues include “giv[ing] authority to intersex people” through the

inclusion of first-person narratives on course syllabi and “mak[ing] an effort to avoid

presenting intersex voices as in need of legitimizing or interpretation by nonintersex

‘specialists’”; not “exploit[ing] intersex existence for gender-sex deconstruction only”;

“assum[ing] that intersex people are everywhere including in your classroom”; “recogniz[ing]

that the intersex movement may have priorities and strategies beyond those of the gay and

lesbian or transgender movement” and considering other movements the intersex

movements have implications for (and vice versa) such as

the (dis) ability movement (normalization of bodies marked as different); psychiatric

survivor movement; medical ethics (informed consent), health activism, and feminist

antiviolence movements (child sexual abuse, domestic violence, female genital

cutting, etc.); reproductive rights; children’s and youth rights; and so on (Koyama &

Weasel, 2002, pp. 175-176).

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Even Cheryl Chase herself echoed this criticism of the instrumentalization of

intersex individuals and intersex issues by feminist academics in order to prove a theoretical

point in a fascinating interview between her and psychiatrist and the first chair of the ISNA’s

Medical Advisory board Vernon Rosario conducted in 2003 and published in a 2006 issue of

the Journal of Gay and Lesbian Psychotherapy. In the published interview Chase responds to

Rosario’s question, “Returning to feminist appropriations of intersex, Suzanne Kessler in

Lessons From The Intersexed proposes that intersex will help break down the gender divide.

How do you feel about that?” with the following:

Among the humanities scholars who have taken an interest in intersex, Kessler is one

of the early ones to actually be willing to listen to us and be helpful. She has been

helpful in many ways, and we are grateful for that. However, I find the idea that

intersex is a tool we can use or a bit of evidence we can use to create a society that

has no sexes or genders to be ludicrous (Rosario, 2006, p. 98).

Some critics singled out feminist theory and the small group of those feminist

academics without diagnosed intersex conditions both formally and informally associated

with the ISNA as having in some way had undue influence over its political and tactical

trajectory (Spurgas, 2009, p. 107). Ultimately, any attempt to determine just how much

influence any one particular feminist theory or one particular academic had on the intersex

rights movement generally or the ISNA in particular can be nothing more than conjecture,

and this is a methodological obstacle that anyone engaging with these events and their

outcomes must manage. Such conjecture is also, in my mind, a distraction from serious

consideration of the important concerns these critiques raise. However, it is understandable

that some individuals began to wonder about the relationship between the feminist

academy/academics and the ISNA’s political and practical transformation and its ultimate

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endorsement of the DSD nomenclature. The nine-year period between the ISNA’s

successful capitalization upon the John/Joan case in 1997 and the publication of the

Consensus Statement in 2006 saw both the ISNA’s transformation as an organization and a

substantial increase in both feminist academic theoretical and practical engagement with

intersex issues and activism. Not only was there a proliferation of feminist academic

publications on the ethics, politics, history of, and science behind the medical management

of intersex conditions14 during this period, individuals with diagnosed intersex conditions

and/or who identified as intersex activists starting coming into increased contact with and

even joining the academy. For example, Associate Professor of Sociology at Wilfrid Laurier

University Morgan Holmes completed her PhD at Concordia University in 2000 and cites

both Anne Fausto-Sterling and Suzanne Kessler as providing her with inspiration and

support in the Acknowledgements to her 2008 book Intersex: A Perilous Difference (Holmes,

2008, p. 9). After publishing “Feminism and Intersexuality” in the journal Feminist Theory in

2001, Iain Morland went on to complete his PhD in English Literature and Media Arts at the

University of London and has held lectureships at both Cardiff University and the University

of the West of England. Later articles of Morland’s have appeared in Textual Practice (2001)

and Feminism and Psychology (2008), and Morland would come to guest edit the 2009 special 14 In 1998, social psychologist Suzanne J. Kessler published her monograph Lessons from the Intersexed, the second chapter of which “The Medical Construction of Intersex” first appeared in a 1990 issue of Signs and is cited by many (most notably Dreger & Herndon, 2009) as foundational to both the intersex rights movement and the vaguely bounded field occasionally referred to as intersex studies. That same year, feminist historian and philosopher of science Alice D. Dreger published her monograph Hermaphrodites and the Medical Invention of Sex surveying the history of the medical management of “human hermaphrodites” in France and Britain between 1880 and 1915 and guest edited a special issue of the Journal of Clinical Ethics devoted to the topic of intersexuality. In 1999, articles from this special issue along with additional articles by academics, activists and physicians appeared in a volume edited by Dreger titled Intersex and the Age of Ethics. Additional noteworthy publications of this period of time include 2000’s Sexing the Body: Gender Politics and the Construction of Sexuality by Anne Fausto-Sterling and 2003’s Intersex and Identity: The Contested Self by sociologist Sharon E. Preves.

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issue of GLQ devoted to academic ruminations on (as well as criticisms and defenses of) the

adoption of DSD appropriately titled “Intersex and After.”15 And many intersex activists

began publishing in and appearing at (primarily feminist) academic journals and conferences

and their work was increasingly taken up by at least some feminist academics.16 Furthermore,

and perhaps most importantly, at the same time that intersex individuals and activists began

to get more involved in academic culture, feminist academics began to get more involved in

the intersex activism on the streets—or at the very least, on the non-profit boards. There

was an influx of feminist academics into the ranks of the ISNA, most notably Alice Dreger

whose formal association with the ISNA began in 1996 and who spent six of the nine years

she was with the ISNA serving as Chair and President of the board of directors (1998-2003

and 2004-2005) before taking up the paid, part-time position of director of medical

education in 2005 (Dreger & Herndon, 2009, p. 200).17 In addition to Dreger, feminist

scholar April M. Herndon served as the ISNA’s director of programming from June 2005 to

May 2006, feminist philosopher Ellen K. Feder is identified on the ISNA’s website has

having been an active member of the organization since 1999, and it was under feminist

sociologist Monica Casper’s leadership as executive director of the ISNA in 2003-2004 that

15 This is, of course, by no means an exhaustive list, particularly given that there are likely many individuals within the academy who neither take up intersex issues in their work, publically identify as having intersex issues and/or are unaware of their having an intersex condition having never been diagnosed. 16 At the 2000 meeting of the Central Division of the American Philosophical Association, Chase appeared on a panel on Issues in Intersexuality presented by the Society of Lesbian and Gay Philosophy titled “Philosophy as a Tool for Real-World Activism” (APA, 2000, p. 65). For examples of articles written by intersex activists or individuals with intersex conditions that either appeared in academic journals or were at the very least taken up by feminist academics, see Chase, 1993, 1997, 1998a, 1998b, 1999; Davis, 2011; Davis & Murphy 2013; Holmes, 2005, 2008a, 2008b, 2009, 2011; Morland, 2009, 2011, 2012. 17 During the interim 2003-2004 period, Dreger served as chair of the ISNA’s fundraising committee (Dreger & Herndon, 2009).

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the group created the Medical Advisory Board, which many see as marking the end of an era

in the history of the organization (Dreger & Herndon, 2009, p. 200; Preves, 2004-2005).

It is likely a result of this history that many of those activists and feminist activists

who have found themselves in the “admittedly uncomfortable” position of strategically

endorsing the DSD treatment model after years critiquing the pathologization of intersex

conditions have provided some of the most philosophically rigorous versions of the

arguments in its favour. Generally speaking, four types of arguments have been offered in

the DSD treatment model’s favour.

V. The Arguments for DSD

The first of these—which is also least commonly given—defends the adoption of the

DSD nomenclature and treatment model on specifically biological and/or medical grounds.

Within the Consensus Statement itself we can find two such arguments: that “a modern

lexicon is needed to integrate progress in molecular genetic aspects of sex development” and

that “because outcome data in individuals with DSD are limited, it is essential to use

precision when applying definitions and diagnostic labels” (Lee et al., 2006, e488). In

addition to this, we can add, with some caution, Dreger et al.’s 2006 arguments for the

“disorders of sex differentiation” as a nomenclature that integrated progress in the science of

sex differentiation (and specifically, did not privilege gonads given they do “not correlate

simply with genotype, phenotype, physiology, diagnosis or gender identity”), that did not

confuse physicians and patients (thus complicating treatment) and that enhanced rather than

complicated the use of “medical informatics in research and clinical practice” (Dreger et al.,

2006, pp. 731, 733).

The second and third types of argument favor these changes on specifically sociopolitical

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grounds, with the former focused specifically on the sociopolitical problems of intersex and

the latter on the sociopolitical good (or at least, neutrality) of DSD. Academic and/or

activist proponents of the DSD nomenclature and treatment model often give a

combination of both types of arguments when articulating their position. Each of these

corresponds to one part of the discursive shift that others (Germon, 2009; Spurgas, 2009)

have argued occurred with the adoption of DSD and with whom I agree: the jettisoning of

intersex as a legitimate queer sociopolitical identity, and the constitution of a new,

specifically biomedical reconstitution of intersex conditions as disorders of sex development.

Arguments focused on the problems associated with intersex point out that not only

does the question of who “counts” as intersex remain contentious, but further, they deny the

existence of an intersex community similar to the “lesbian community” and subsequently

deny the existence of an intersex identity (beyond that of the intersex activist) that is not the

sexualized result of medical power. The term forces a normalizing, politicized, and

presumably queer identity upon individuals with these conditions to which many not only do

not relate, but further, find offensive (Dreger & Herndon, 2009).18 They argue that many

understandably mistake intersexuality as analogous with homosexuality, such that they

assume there is an intersexual identity and thus that the “intersexual” exists in the same way

the “homosexual” does. As a result, they argue: 1) that those who object to the adoption of

DSD as offensive are trying to prevent a pejorative meaning from attaching to something

which does not really exist and 2) that “the pathologization putatively effected by the new

nomenclature would constrain unduly the range of possibilities of affected individuals to

18 While parental concern regarding the politicized nature of the term intersex and of assigning such a term to a child is understandable, it is not clear to me either that a) physicians were ever assigning children that diagnosis at birth (especially given the large amount of literature on physicians witholding diagnoses) or that b) intersex is somehow a more inherently political a label than male or female.

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understand themselves” (Feder, 2009, p. 226). Furthermore, these arguments point to

concerns about the co-optation of intersex by trans* individuals19 and instrumentalizing

feminist academics, as well as the unwanted attention “intersex” draws from fetishists as a

result of its implied sexual nature, individuals who are known contemptuously within the

community as “wannafucks.”20

The third type of argument deals specifically with the presumed benefits of the DSD

nomenclature and treatment model, and these arguments can be further sub-divided into

those which are explicitly sociopolitical and those which are couched in terms of pragmatism

or practicality (and which I would argue are nonetheless still sociopolitical insofar as they

aim at social and political interventions). Beyond the DSD nomenclature meeting parents

and physicians “where they live,” and thus better facilitating collaboration between activists

and medical authorities, the other main pragmatic argument has to do with the ability of the

DSD nomenclature to improve access to care for those with intersex conditions unable to

get it. Ellen K. Feder (2009) makes this argument most explicitly, stating that as a result of

years of politicized intersex activism and a mistaken (though understandable) assumption of

intersexuality as analogous with homosexuality, medicine has come to ignore or marginalize

some of the concrete medical concerns faced by those with intersex conditions “in favor of a

19 For example, in addition to the quote introduced on page 46 of this dissertation by Koyama (2006, para. 23) regarding trans* individuals turning to intersex identity in order to find “a social and biological justification for being who they are,” Dreger et al. (2005) make a rather oblique reference to the terms intersex and hermaphrodite attracting “a large number of people whose interest is based on a sexual fetish and people who suffer from delusions about their own medical histories”(p. 732). 20 It is not clear to me that increased medicalization of a bodily state or condition necessarily removes those with those bodies or conditions out of the realm of the pornographic; the increasing medicalization and pathologization of obesity has done little to temper the desires of “chubby chasers.” Moreover, the abundance of non-condition or body specific medicine-related fetishes to a more general sexualization of the clinic that I would argue is often seen in and should be expected of other sites of knowledge/power such as the school and the prison.

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disproportionate, or even what appears in some cases to be a kind of hysterical, concern with

gender and genitalia” (p. 229). Through the remedicalization of intersex conditions as

disorders of sex development, we can reorient medical attention to the matters of health and

“human flourishing” which are its proper purview, such that individuals with intersex

conditions may be able to receive the competent, respectful care they need. The explicitly

sociopolitical arguments offered in the DSD nomenclature’s favor stress the benefits of the

language’s ability to render intersex conditions “disorders like any other,” that is, manageable

discrete problems of the body which in no way influence sex, gender or sexuality. Unlike the

socio-politically challenging term ‘intersex’—with its implications that one is neither male

nor female—‘DSD’, it is argued, takes pressure off both parents and physicians to “shore

up” an infant’s sex through genital normalizing surgery. Furthermore, this will not only allow

individuals to avoid the imposition of a sexualized, queer identity to which they do not

relate, but further, “makes the phenomenon seem more manageable by being less potentially

all-encompassing of their identities” (Dreger & Herndon, 2009, p. 212). Beyond the

nomenclature, DSD proponents emphasize the new treatment model as espousing “patient

centered care” (ISNA, 2000; Consortium on the Management of Disorders of Sex

Development, 2006a). According to the ISNA, patient-centered care is care that grants the

individual with an intersex condition the authority and autonomy to direct their own health

care. In terms of the clinical environment, ISNA’s “Clinical Guidelines” identifies “patient-

centered care” as ideally cashing out as lifelong medical management that espouses a

multidisciplinary team approach to caring for individuals with variations in congenital

sex anatomy—with teams ideally consisting of members from the following

disciplines: child psychology/psychiatry, genetic counseling, gynecology, nursing,

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pediatric endocrinology, pediatric urology, social work and ‘others as needed’

(Consortium on the Management of Disorders of Sex Development, 2006a, p. 10).

The fourth and final type of argument offered in favour of the DSD treatment

model, is one upon which the prior two forms of sociopolitical argument rest. It states that

we need to “remedicalize” these conditions so as to separate them specifically from

sociopolitical issues. For example, Feder (2009) contends that by rendering intersex

conditions “disorders like any other,” we may in turn make clear the distinction between

“the cultural issues of identity in which medicine has intervened and narrower matters of

health,” such that medicine may reorient itself towards its proper subject of “human

flourishing” (p. 239). Thus, DSD proponents claimed that the language would make

physicians and parents feel less compelled to choose surgery and “fix” the problem of the

intersex body by rendering intersex conditions less sociopolitically challenging through their

identification as manageable disorders of the body. These four types of arguments are the

ground upon which some of the most vocal critics of the pathologization of intersex

conditions supported their repathologization as disorders of sex development.

VI. Conclusion

In addition to reviewing the histories of medicine, feminist scholarship, and intersex

activism out of and against which the DSD treatment model emerged, I have, thus far, also

sketched out both the why and the how behind the move from intersex to DSD. That is, I

have thus far both 1) outlined the motivations that drove those who once criticized the

pathologization of intersex conditions to endorse a treatment model reclassifying them as

disorders of sex development and 2) detailed the four arguments via which this apparent

reversal in position was achieved. I say apparent here because I do not think that the way any

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of these people actually think about intersex conditions has fundamentally changed. That is,

I don’t think that Chase, Dreger, Feder, Karkazis, Herndon, or any other activist or

academic who endorsed DSD did so because they had actually come to believe that having

an intersex body is in fact pathological in itself.21 Supporting the identification of conditions

with the potential to cause the atypical development of sex characteristics as disorders of sex

development was merely a strategy, not a sign of their newfound belief that atypicality was

indeed equivalent to pathology; ambiguous genitalia are not the “concrete medical needs”

they are trying to shift medical attention towards.

The hope was to achieve a shift in rhetoric that would dispel the specter of queerness

haunting those bodies of those deemed inter-sex, so that both physicians and parents would

focus their anxieties, attention and interventions on that which was really or rather naturally

pathological (such as the oft-cited potentially fatal salt-wasting associated with some forms

of CAH), as opposed to that which was socially constructed as pathological (such as failing to

cohere with norms of sex and gender).22 The goal here—if not a moratorium, then at least a

reduction in the performance of genital normalizing surgeries—was, uniquely, one shared by

the vast majority of activists and academics whether they were for or against DSD. And if

that goal had been achieved, perhaps the ends (fewer surgeries) would have justified the

means (a more pathologizing diagnostic label that at least some intersex people experience as

an imposition and/or a betrayal). Unfortunately, DSD failed as a strategy; not only are the

surgical recommendations in the Consensus Statement nowhere near the moratorium that

the majority of activists and academics wanted, it is now painfully clear that there has been

21 Karkazis did initially endorse DSD (Feder & Karkazis, 2008) but has since backed off from this position. 22 Though the term “real” is often invoked as the oppositional binary term to “socially constructed,” this is a mistake for many socially constructed things are very obviously real and obtain in the world such as race, the cosmetics industry, or professional associations.

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no decrease in the frequency with which medically unnecessary genital normalizing surgeries

are performed (Feder, 2014, p. 88, pp. 133-152). In her 2014 book Making Sense of Intersex:

Changing Ethical Perspectives in Biomedicine, Feder writes that although the paternalism that

characterized the clinical management of those with intersex conditions under the OGR

treatment model is increasingly a thing of the past, “no significant change in the number of

surgeries performed has occurred” (Feder, 2014, p. 140). Drawing on interviews with

physicians engaged in intersex management, Feder found that where counseling parents

regarding the performance of genital surgeries is concerned, physicians often see themselves

as ethically required to engage in the type of non-directive counseling that characterizes the

realm of prenatal genetic counseling. Clinicians see themselves as ethically required to

present the potential benefits and harms of genital normalizing surgery (as well as the

absence of evidence for both) in a way that achieves a type of “net neutrality” wherein the

physician withholds their own value judgments and leaves the final decision to the parents

on the basis of facts alone. Thus, even those physicians who are personally skeptical about

genital-normalizing surgeries withhold that judgment and their concerns from parents or

proxy decision-makers, for it is “not their place to promote ethical reflection in the parents

of the children with atypical sex anatomies they treat,” particularly in the context of

“nonurgent medical decisions” (Feder, 2014, p. 136). Subsequently, genital normalizing

surgeries are now constituted in a way such that they are performed with the same regularity

as before, but are now almost exclusively justified by parental desire and choice (Feder, 2014,

pp. 133-141).23 Thus, despite the Consensus Statement’s official caution against unnecessary

23 It is worth noting that in light of the overwhelming lack of clinical evidence regarding the various surgical techniques used with intersex infants, there is really little physicians can tell parents regarding the potential benefits or harms associated with them. Cohering with this logic, then, ethical counseling would necessarily focus on the absence of evidence for

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surgeries (particularly in cases of less severe masculinization), the frequency with which they

are performed remains undiminished.

Unsurprisingly, critiques of the DSD nomenclature and of the practice of surgical

normalization continue to be raised. Beyond its potentially stigmatizing and delegitimating

effects for those who identify as intersex, many have countered that the pathological

language of disorder not only demanded fixing, but further, made it even more difficult to talk

about intersex conditions with children who have them in a way that doesn’t make them feel

“inherently dysfunctional and bogus” (Baechler, 2006, para. 3). Further still, many have

pointed to the lack of consensus surrounding the “Consensus Statement”—including some

of those involved in the process. For example, Alice Dreger writes,

[A]s I’m finishing up the handbooks, there’s a “consensus” meeting of pediatric

endocrinologists coming about in Chicago. I put “consensus” in quotes because this

was an invitation-only meeting of mostly M.D.’s; no parents were invited, only two

adults with intersex were invited, and most of the medical specialties who care for

people with intersex were either not represented or very underrepresented.

Nevertheless, this was an important meeting, and we knew that it was a chance to

move the system forward, towards more patient-centered care (Dreger, 2007, para.

20).

Whatever little international input there was regarding either the terminology or the

treatment model came solely from medical professionals, leading critics to accuse both the

treatment model itself and the process out of which this internationally applied standard of

care was generated of an ethnocentricity that is evident in the nomenclature’s failure to

translate in other languages (Spurgas, 2009, p. 111). Critics have pointed out that “disorders regarding both potential harms and benefits, and thus, the experimental nature of these procedures.

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of sex development” has “unfortunate overtones of ‘disturbed’ in German” (“Störungen der

Geschlechtsentwicklung”) and that the ambiguity between sex development and sexual

development in Romance languages such as French (“désordres du développement sexuel”

or “anomalies du développement sexuel”) and Spanish (“trastorno de desarollo sexual”)

“leads the layman to think that you are talking about sexual orientation, pedophilia,

fetishism, masturbation, etc.” (Thomas, 2006, p. 3). As Spurgas (2009) writes,

Regardless of being ‘pro-intersex’ or ‘pro-DSD’, most intersex individuals, activists

and allies around the world agree that the DSD initiative was almost exclusively a U.S.-

based enterprise and that there will inevitably be widespread international

consequences for this North American medical and taxonomic imperialism (as their

has been in other situations of Western medical colonialism) (p. 111).

In addition to the pathologizing, ethnocentric nature of the nomenclature, others,

like self-identified intersexed sociologist Georgiann Davis (2011) argue that the shift to

DSD has accomplished a reassertion of medical authority over intersex conditions—

authority that was successfully challenged by intersex activists,“with legitimacy gained

from feminist scholarship,” in the 1990s (p. 158). Davis argues that through the

identification of intersex conditions as discrete disorders of the body “like any other”

properly and best managed by expert teams, physicians are able to reassert their authority

over intersex conditions (and the bodies and individuals that have them), while at the

same time minimizing their exposure to liability (p. 175). Moreover, Davis is but one of

many who have raised concerns over the nomenclature’s “perceived complicity with

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capitalism, in a system in which medicalization is made profitable” (Davis, 2011, p. 167;

Spurgas, 2009, p. 106).24

Beyond this, intersex scholar Morgan Holmes (2008b, 2009) and critical-disability

scholar Robert McRuer (2009) have argued that DSD not only fails to bring intersex into

closer contact with disability studies and activism (as some have argued, particularly

Koyama, 2006), but furthermore, Holmes (2008) has argued that the pathologization of

intersex bodies through DSD serves to reinforce the pursuit of prenatal technologies for

the eugenic purposes of identifying intersex fetuses for selective termination. Eugenic

practices aim at modifying the population by preventing or ending certain lives through

practices like contraception, sterilization, abortion, and euthanasia, as well as improving

or bringing about other lives through practices like environmental reforms or pre-

implantation screening and selection of embryos (Levine and Bashford, 2010, pp. 3-4).

Critical disability scholars and bioethicists have critiqued that which Levine and Bashford

(2010) refer to as the “evaluative logic” at the core of such practices, identifying “some

human life [as] of more value—to the state, the nation, the race, future generations—than

other human life” (pp. 3-4). Thus, such practices are applied differentially in order to

eliminate particular lives or populations and to promote and proliferate others. Though

few of those who strategically endorsed DSD have acknowledged or attempted to address

these eugenic concerns, the concerns are justified if recent publications like Adam et al.’s

2012 article “Ambiguous Genitalia: What Prenatal Genetic Testing is Practical?” or the

2013 American Journal of Bioethics target article and a suite of replies debating the ethics of

24 As Davis (2011) points out, “[t]he surgical modification of intersex genitalia is an incredibly lucrative practice for urgologists because the surgeries are imperfect and often require revisions and modifications, or more directly, reoccuring visits to a costly operating room” (p. 167).

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prenatal genetic testing to prevent the birth of infants with intersex conditions are any

indication.25

Finally, in a surpise move, the United Nations Special Rapporteur on Torture and

other Cruel, Inhumane or Degrading Treatment or Punishment, Juan E. Méndez, released

a statement in February 2013 condemning the performance of genital normalizing

surgeries on intersex infants unable to consent, as well as their involuntary sterilization,

and calling upon all States to repeal any laws allowing such “intrusive and irreversible

treatments” (Méndez, 2013, p. 23). Méndez’s critique is the only one I’ve managed to find

any acknowledgement of or response to by health care professionals, official or otherwise,

since the adoption of the DSD treatment model. In November 2013, AIC posted a letter

by a group of endocrinologists responding to the Special Rapporteur’s report. It is signed

by S. Faisal Ahmed, the Samson Gemmell Chair of Child Health at the University of

Glasgow, on behalf of a group 14 international endocrinologists (including Faisal), who

collectively represent members of the European, American, Latin-American, Japanese,

and African pediatric endocrine societies.

The letter begins by thanking the Special Rapporteur for drawing attention to the

issue of the treatment of atypical genitalia (“in [patients for] whom a condition classified

as a ‘disorder of sex development’ is suspected”), which they note is associated with

“stigma and shame,” with the hope that “discussions and greater awareness generated by

this report may eventually lead to improved care, long-term outcomes and wellbeing for 25 Thankfully, our limited knowledge of the molecular genetics underlying many intersex conditions also limits our ability to prenatally screen for fetuses with such conditions, for the moment. Adam et al. lament that although our knowledge of the multitude of genetic mutations responsible for DSDs is increasing, “our postnatal genetic testing is still low yield,” concluding “until we are able to fully understand the genetic causes of the clinical diagnoses made after birth, our ability to molecularly diagnose these conditions prenatally will remain elusive” (Adams et al., 2012, p. 1341).

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affected children and families” (Ahmed et al., 2013, para. 1). They agree that historically,

“a great deal of emphasis has been placed on surgical interventions that have been aimed

at ‘normalizing’ the appearance of the child’s genitalia” and acknowledge that “some

individuals who have undergone such procedures have felt that they have been harmed as

a result” (para. 2). Nonetheless, they argue that “over the last few years, medical practice

has begun to change considerably, with a greater emphasis being placed on consideration

of functional and psychosocial outcomes rather than simply cosmetic appearance,” while

admitting there is also a great deal of variation in clinical practice internationally. They

stress the need for both the standardization of practice and increased knowledge

production about these practices, writing,

there is a need for greater cooperation and collaboration amongst clinical specialists

who deal with such conditions through local, national and international networks to

increase knowledge regarding long-term outcomes and optimal care for affected

individuals, now and in the future (Ahmed et al., 2013, para. 2).

The authors go on to stress the need for access to competent medical care, arguing

that every affected child and their family “require access to highly-skilled specialists

who can cater for and are receptive to [their] diverse needs,” before concluding with

the acknowledgement that “any clinical intervention, medical or surgical, irrespective

of the underlying condition, needs to be considered very carefully in all young children

who cannot give informed consent,” which they identify as the principle at “the heart

of all clinical practice in children” (Ahmed et al., 2013, paras. 3-4).

This letter and its logic are, I argue, exemplary of the general position among clinical

practitioners in the Post-Intersex/DSD era. Intersex conditions and ambiguous genitalia in

particular are obviously pathological and need to be fixed, but medical practice historically

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focused on aesthetic over “functional” and/or “psychosocial” outcomes and was not

evidence-based (with the implication being that ethical medicine is equivalent to evidence-

based medicine). Thus, the goal in the Post-Intersex/DSD era is not fewer surgeries, but better

surgeries along with their international standardization. The two main specters that haunt the

practical and rhetorical management of intersex—a general paucity of evidence and inability

to acquire informed consent—are present here as well, in an emphasis on knowledge

production and an acknowledgement of informed consent (or lack thereof) as at “the heart”

of all pediatric care, with no real discussion of how we might address concerns regarding

informed consent specifically when dealing with actual intersex kids. Thus, current surgical

practice is positioned as superior to past surgical practice on the grounds of the latter’s

improper focus, paucity of evidence, and violation of autonomy. However, the only real

difference here seems to be that of surgical focus: current surgical practice suffers the same

paucity of evidence and engages in the same violations of autonomy. In fact, physicians have

never been quite as explicit about the extent of what they don’t know about DSDs or DSD

management as they are now, and yet the frequency with which infants are subjected to

surgical “treatment” continues unabated. For example, a 2012 meeting of the multi-

disciplinary Working Party on DSD in Annecy, France focused specifically on “needed

information” rather than attempting to “define the present status of management of each of

the various DSD diagnoses” with the hope that “by recognizing that which was not known

[emphasis in original], protocols will be developed for improving both early management

and transition to adult life” (Schober et al., 2012, p. 617). As Diamond and Garland write,

the Working Party concluded that the studies they reviewed in order to “assess the validity of

surgery for children with [DSDs]” suffered from “methodological weaknesses,” the fact that

evidence-based recommendations regarding timing and surgical approach cannot be made,

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“that critical long-term studies are ‘scarce’ and unlikely to emerge, and, most significantly,

that ‘no studies’ support the belief that gender variant children require early genital surgery

for societally favored gender development” (Diamond & Garland, 2014, pp. 2-3; Creighton

et al., 2012; Schober et al., 2012).

Thus the epistemic and ethical context of DSD seems to be exactly the same as that

of OGR; if anything, the twin specters conjured by a lack of clinical evidence and the

violations to autonomy these practices constitute loom larger than ever before. And yet,

there is no indication that medical practice has changed in the least. Furthermore, following

the adoption of the DSD nomenclature and treatment model, it seems unclear to many of

those interested and invested in bringing about bigger changes to the treatment model what

to do next. This lack of clarity was only compounded by the fractious controversy the

Consensus Statement and the ISNA’s involvement in its production has ignited within the

intersex activist and feminist academic communities. The political power of intersex activist

community once embodied in the ISNA is now scattered among multiple different activist

groups like the Accord Alliance, Organisation Intersex International, Bodies Like Ours,

Intersex Initiative Portland, and Advocates for Informed Choice, which range along the

political spectrum and undertake a variety of different forms of activism from hosting online

message boards to legal initiatives.26 Further, the prolonged timelines associated with

26 Notably, Advocates for Informed Choice, a non-profit organization which undertakes legal strategies “to advocate for the legal and human rights of children born with intersex traits,” is currently pursuing a lawsuit in the state of South Carolina that could set a new precedent regarding intersex management in that jurisdiction (Advocates for Informed Choice, n.d., para. 1). In 2013, the group, in colloboration with the Southern Poverty Law Center and the firms of Janet, Jenner & Suggs and Steptoe & Johnson, filed two lawsuits on behalf of an intersexed child known a M.C. who received feminizing surgical normalization (including gonadectomy) at the age of 16 months while under state care and who now identifies as male (Tamar-Mattis, 2013). The state-level lawsuit (M.C. vs. Medical University of South Carolina) brought claims against the hospitals “based on lack of informed consent and

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academic publishing delayed the response of many feminist academics for whom both the

Consensus Statement and their colleagues’ endorsement of it came as a surprise. This

uncertainty has taken on an increasingly tragic dimension as it has become clear that the

strategy of meeting physicians at the level of the biomedical has failed. As Feder (2014)

writes, “for several years, it did not appear that change beyond that modestly outlined in the

2006 Consensus Statement was possible” (p. 207). I would argue that for many of those

interested and invested in resisting the DSD treatment model and the practices of

normalization outlined within it (myself included), it is still not clear what change is possible,

or, more importantly, how best to achieve it. Indeed, the fracturing of the activist and

feminist academic communities this strategic failure has brought about seems to have left

both groups ill-equipped to address this outcome and faced with the same lesson they had

themselves been trying to teach physicians through their critical intersex scholarship and

activism: good intentions do not necessarily lead to good outcomes.

In an attempt to move both our discussion and practice around intersex forward, I

turn in chapter two to those four arguments outlined above in favor of the DSD treatment

model, undertaking a detailed review of them in order to examine what went wrong with

DSD. That is, I want to cash out why it is that DSD failed as a strategy to achieve the goals

of reorienting medical attention towards natural rather than socially constructed pathologies,

and thus bring about reduction in the frequency with which medically unnecessary genital

normalizing surgeries are performed on infants and children unable to consent.

against the Department of Social Services based on gross negligence,” while federal-level companion lawsuit (M.C. vs. Aaronson) charged that the defendents—including NATFI convener Aaronson—violated M.C.’s constitutional rights (Pagonis, 2015, para. 8). In January 2015, the United States Court of Appeals for the Fourth Circuit overturned a district court’s ruling in the case of M.C. vs. Aaronson, preventing the federal case from proceeding to trial (Pagonis, 2015). As of September 2015, the group is continuing its pursuit of the state-level case, which the state court has already ruled may proceed to trial (Pagonis, 2015).

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Chapter Two: Diagnosing the Failure of DSD:

Medical Power/Knowledge and the Fictitious Unity of Sex, Gender, and Sexuality

I. Introduction

In this chapter, I lay out my diagnosis of what went wrong with DSD—that is, why

it failed to achieve the specific goal of a reduction in the performance of medically

unnecessary genital normalizing surgeries on intersex infants. I begin with an analysis of the

arguments offered in favour of DSD, which I argue are at the heart of DSD’s failure. I

conclude that these arguments entailed a theoretical commitment to 1) an objectivist theory

of pathology and the nature/culture distinction it entails; 2) the binaries of

impairment/disability and sex/gender which follow from the logic of nature/culture; and 3)

an understanding of power which Michel Foucault refers to as sovereign or juridico-

discursive. This shifted the terrain for thinking and talking about intersex conditions in the

post-Intersex/DSD era in ways that have contributed to the uncertainty that still plagues

many of those hoping to move beyond DSD.

II. Troubling DSD In this section, I critically assess the three remaining types of arguments offered in

favor of the DSD nomenclature—beginning with the specifically biomedical arguments in its

favor—toward the end of providing an argument for DSD’s failure as a strategy. It is worth

noting that few activists and feminist academics or clinicians provide these types of

arguments in favor of the DSD nomenclature or its accompanying treatment model. And

this makes sense—as the Working Party on DSD concluded at their 2012 meeting in

Annecy, France, there is no clinical evidence to ground the surgical management of intersex

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conditions and until there is, “decisions about techniques and timing of genital surgery will

continue to be debated by a multidisciplinary team on a case-by-case basis with individual

surgeons relying on their own professional expertise and opinions to recommend what they

judge best for their patients” (Creighton et al., 2012, p. 608).27 The primary (and really the

only) biomedical arguments in favour of DSD come from the Consensus Statement itself, to

which we can cautiously add Dreger, Chase, Sousa, Grupppuso, & Frader’s (2005)

arguments in favour of “disorders of sex differentiation.”

In addition to “recognizing and accepting the place of patient advocacy” as well as

heightened awareness of ethical issues and patient advocacy concern,” the Consensus

Statement provides two specifically biological or biomedical arguments for the

reclassification of intersex conditions as disorders of sex development and the revision in

treatment model it outlines. First, that “a modern lexicon is needed to integrate progress in

molecular genetic aspects of sex development” noting that the ideal nomenclature is one that

is both “sufficiently flexible to incorporate new information yet robust enough to maintain a

consistent framework” and “is descriptive, reflect[ing] genetic etiology when available and

accommodate[ing] the spectrum of phenotypic variation” (p. 490). Second, that “it is

essential to use precision when applying definitions and diagnostic labels” given the limited

outcome data on those with DSD. Additionally, Dreger, Chase, Sousa, Grupppuso, & Frader

(2005) identify the intersex system of nomenclature as “scientifically questionable” due to its

failure to represent or capture natural kinds or, in their words, to “carve the world at its

joints” (p. 730). Further, they appeal for a nomenclature that does not have any implications

regarding future sex or gender identity, given that they may be at odds with the particular

27 The move to non-directive counselling, however, seems to imply that patients—and particularly, parents/surrogate decision makers—do not in fact have access to their surgeon’s professional expertise or opinions during the decision-making process.

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markers of sex (for example, a woman with CAIS may identify and present as a woman, yet

nonetheless have testicles and normal androgen production). They also join the Consensus

Statement authors calling for a nomenclature that would better facilitate knowledge

production about those with intersex conditions.

There is, unfortunately, little explanation within the Consensus Statement as to how

DSD might be a less confusing or more precise diagnostic label than intersex, or how it is

somehow closer to “carving the world at its joints,” given that its categories capture a variety

of more or less well-known and more or less related conditions, each with their own unique

etiology, sequelae, health risks, and treatment mode. For example, as illustrated in Table 2

below, 46 XY DSD alone captures individuals with CAIS, PAIS, cloacal exstrophy,

hypospadias, and micropenis, as well as any former “true hermaphrodites” with 46 XY

chromosomes.

Table 2 Intersex Conditions Sorted by DSD Classification 46 XY DSD 46 XX DSD Sex Chromosome

DSD CAH; Cloacal Exstrophy; 17β-Hydroxysteroid Dehydrogenase-3 Deficiency; 5 α reductase deficiency; PAIS; CAIS; Hypospadias; Micropenis; Complete or Partial Gonadal Dysgenesis; Ovotesticular DSD; Penile Agenesis or Aphallia

CAH; Cloacal Exstrophy; 17β-Hydroxysteroid Dehydrogenase-3 Deficiency; De La Chappelle or XX Male Syndrome (46 XX Testicular DSD or 46 XX Ovotesticular DSD); Labial Adhesions

Klinefelter Syndrome and variants (47 XXY, 48 XXXY etc.); Turner Syndrome and variants (45 X); 45 X/46 XY Mixed Gonadal Dysgenesis; 46XX/46XY Chimerism

Note. From Peter A. Lee et al., “Consensus Statement on Management of Intersex Disorders,” Pediatrics 118.2, 2006, e489, table 2. Indeed, given the wide array of diagnoses that fall within each category, not only is it not

clear how the DSD nomenclature integrates progress made in our understanding of the

molecular genetics of sex differentiation, but it’s also not clear that such integration is even

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possible. Furthermore, given our lack of knowledge about the molecular genetic mutations

responsible for the majority of DSDs, it’s unclear how we could even hope to incorporate it

into a system of nomenclature or treatment model at this time. As Hiort et al. (2012) write,

“exact aetiology and pathogenesis remain unclear in the majority” of intersex conditions (p.

625):

For some disorders like complete androgen insensitivity, a molecular diagnosis can be

obtained in almost 90% of the cases, while in others like complete gonadal dysgenesis

it may be below 20%. For some clinical entities like Mayer-Rokitansky-Küster-Hauser

syndrome (MRKHS) (a syndrome with aplasia of the uterus and renal abnormalities)

molecular pathways and genetic causes are completely elusive at this point (Hiort,

Wünsch, Cools, Looijenga, & Cuckow, 2012, p. 625).

Given this, it is unsurprising that in the majority of cases, diagnosis achieved via a

combination of biochemistry and karyotype is rarely confirmed by genetic analysis (only

~20% of those with intersex conditions receive a specific genetic diagnosis) (Lee et al., 2006,

e491). Thus, it is unclear how a system of nomenclature that represented this kind of

information would be helpful, let alone possible.

Despite the apparent failure of the nomenclature with regards to precision or

accuracy it is worth noting that the shift to DSD nomenclature has nonetheless been very

successful in terms of spurring knowledge production about individuals with DSDs. Both

feminist/activist critics and clinicians have identified and bemoaned lack of outcomes

studies (particularly long term) and thus the paucity of clinical evidence supporting the

treatment model for those with intersex conditions. Indeed, I would argue that for many on

both sides, the accumulation of more data about those with intersex conditions has been

positioned as the “magic bullet” which would silence social, political, and ethical concerns

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about the treatment model. Within contemporary clinical practice, ethical medicine is often

seen as equivalent to evidence-based medicine, insofar as the evidence indicates the best, and

thus the most ethical course of action. As Borry, Schotsmans, and Dierickx (2006) put it,

“the provision of empirical medical data about particular interventions seems to improve

and even conclude [emphasis added] the process of ethical decision making” (p. 307). The

production of data itself thus comes to take on a moral value such that there exists a moral

imperative to produce it, particularly in those cases where there is an inadequate evidence

base. In this sense, what Borry et al. refer to as the “empirical value and the normative

value” of that evidence and its production “often cannot be clearly distinguished” (p. 309).

The authors, however, caution against this equation of ethical medicine with evidence-based

medicine, pointing out that while evidence might be a necessary condition for ethical medical

decision-making, it is an insufficient one:

Obviously, an ethical decision will benefit from research information about the

diagnosis, prognosis or treatment of a given condition provided by guidelines,

systematic reviews, or randomized controlled trials. This will lend the necessary

justification for the ethical decision which must be made. However, this does not

mean that it is sufficient justification for a particular choice. The best choice from an

empirical point of view is not necessarily the best from an ethical point of view (p.

309).

In fact, the “normative views of the doctors and patients might flatly contradict the empirical

reality” in that either or both parties might see the best course of action from an empirical

perspective to be the worst course of action from an ethical one (p. 309).28

28 Indeed, this situation often arises in the context of end-of-life care.

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Two years after the publication of the Consensus Statement, the EuroDSD project,

which describes itself as “a collaboration of doctors and scientists from all over Europe”

formed, with initial funding provided by the European Society for Paediatric Endocrinology

(ESPE) (Hiort et al., 2012, p. 625). This group began the web-based EuroDSD clinical

research database, which has been known as the International DSD (I-DSD) database since

2011 and which has been expanded beyond Europe to now include “clinical centres from

Africa, Asia, South America and the USA for entry of patients—many of whom are now

using the I-DSD platform for their own DSD patient data management following the high

standards defined in the EuroDSD project”(Hiort et al. p. 625). As Hiort et al. (2005),

outline in their article, patients of any age treated at a center with “an approved clinician can

be included into the I-DSD registry” (pp. 624, 625). It is the clinician’s responsibility to

obtain informed consent either from the patient or their legal guardian, “according to

national regulations,” however, once this is done, the approved clinician can enter a variety

of detailed information regarding the patient, all of which is stored in a “non-identifiable”

manner using automatically generated identifiers (p. 625). As the authors write, in its current

form, the database compiles “information about birth weight, karyotype, initial sex

assignment and the underlying diagnosis, as well as the level of certainty of this diagnosis.

Additionally, associated malformations can be entered in a standardised manner” (p. 625).

In the second module, clinicians can input relevant family history (including

consanguinity), “initial presentation and the genital phenotype . . . based on the Prader” scale

(allowing for the calculation of “an external masculinization score”) and updates on

phenotypic description in order “to offer insights into long-term changes and outcome” (p.

625). In the third diagnostic module, clinicians can input genetic and chromosomal data and

any other relevant studies. Finally, in the fourth module,

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the entry site can state if further information can be shared, for example data on

puberty and growth, or if there is consent to access case notes. This module also

contains information about biomaterials that are available for defined research

purposes, such as DNA-samples, cell culture, tissue, or plasma and urine samples (p.

626).

According to a 2014 article based on data used from the I-DSD Registry in the

Journal of Clinical Endocrinology and Metabolism, 1050 cases had been submitted to the database

by physicians from 20 centers in 14 countries, 62% of which (or 649/1050) “had a sufficient

level of consent to allow sharing of suitable information” (Cox et al., 2014, e349). While a

pool of 649 potential subjects for research may not seem like a lot, this represents an

exponential increase in the field of intersex research when one considers, for example, that

the summary table in the Consensus Statement titled “Risk of Germ Cell Malignancy

According to Diagnosis” is based on over 1,400 studies of a total of 83 patients. Thus, as an

incitement to produce knowledge about those with intersex conditions, the move to DSD

has been overwhelmingly successful.

Yet at the same time, clinicians acknowledge the problems inherent to producing

knowledge about those with DSDs on the basis of the DSD nomenclature itself due to its

representational failure. In a review article that came out of the 2012 meeting of the Working

Party on DSD, Schober et al. (2012) comment that an international database that sounds

much like the I-DSD registry is necessary “for best consideration of the status of patients

across a number of essential health domains,” one that comprehensively details “anatomy,

surgical modifications and a variety of health outcome measures for staged growth and

development, as well as social detailing of gender and partnering outcomes” (p. 621).

Nonetheless, they lament,

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The difficulties in this ambitious scheme are self-evident. DSD is not a diagnosis. It

comprises a spectrum of abnormalities where there is a discordance of the standard

criteria that define gender. Although some of these very rare conditions have factors

in common, there is great danger in extrapolating findings from one to another

(Schober et al. 2012, p. 621).

Thus, it seems that even though the DSD nomenclature has been wildly successful in

terms of its incitement to produce knowledge, it’s not clear that how effective or useful that

knowledge will be owing to the nomenclature’s failures in terms of precision, accuracy and

representation.

Second are those arguments for the sociopolitical good, or at the very least, the

sociopolitical neutrality of DSD. Recall, these arguments generally hold that we must

repathologize intersex conditions through the adoption of the DSD nomenclature and the

biomedical understanding of intersex conditions it entails, in order to reorient focus towards

its proper objects of health and human flourishing and away from sociopolitical issues of

gender and identity. Given that some intersex individuals have experienced DSD as a

negative imposition, DSD has, at the very least, failed to be socio-politically neutral.

Furthermore, given that it has failed to bring about a reduction in the performance of genital

normalizing surgeries, it seems to have also failed to bring about the kind of refocusing

proponents had hoped for—away from socially constructed pathologies like ambiguous genitalia

and towards natural pathologies like salt-wasting. Thus it has failed to achieve its promised

sociopolitical good as well.

This brings me to the fourth and final type of argument offered by those who

endorsed the DSD nomenclature—that we must separate sociopolitical or cultural issues of

gender and identity from properly natural issues of health and human flourishing, replicating

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the nature/culture binary logic set up in the third type of argument in its distinction between

socially constructed or cultural pathologies vs. natural ones. This argument—particularly the

version of it forwarded by Feder (2009a)—is the most philosophically rigorous one offered

in favor of DSD, in large part due to the emphasis Feder places on normalization’s dual

nature as both capacity-building and docility inducing. Indeed, there are some intersex

individuals for whom medical normalization of their physical states is capacity-building in

the same way that normalization of the diabetic’s blood sugar is capacity-building—most

obviously those with salt-wasting CAH. There are problems with this argument, however,

specifically as regards its use of the terms health and human flourishing.

Feder does not explicitly state what she means by health in the context of her

argument that we must separate cultural issues of gender and identity from those of health

and human flourishing, possibly because health is a notoriously difficult thing to define and

is generally only constituted in relation to disease or pathology. According to the dominant

biomedical model of disease—Christopher Boorse’s objectivist Biostatistical Theory of

Disease or BST—health is defined simply as “the absence of disease” (Boorse, 1997, p. 8).

This definition might strike one as unsatisfying given the moral, political, economic, and

material weight that health has in our society. Indeed, one might think that a society with the

technology to perform face transplants would be able to produce a minimally acceptable

definition of health. However, I argue that we shouldn’t be surprised at our inability to

generate a positive account of health given that the pathological is, as Canguilhem (2007)

tells us, prior to the normal—that is, the normal only comes to be defined once the

pathological appears (pp. 125-144). As Gutting (1989) writes, “the concept of health is only

formed as a contrast to an experience of disease or of the threat of disease” (p. 49). Health is

a “that” which is constituted contextually, in terms of a “not this” (i.e., one is healthy with

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regards to blood sugar metabolism if one does not have diabetes) and further can be defined

in degrees relative to disease (i.e. being healthy for a diabetic). Thus it is perhaps unsurprising

that Feder fails to stipulate what she means by health.

Feder does, however, tell us what she means by human flourishing. In a footnote

accompanying her first use of the term, Feder (2014) identifies it as “most closely associated

in Western philosophy with Aristotle’s treatment of eudaimonia, frequently translated as

“happiness,” writing: “ I have found the concept helpful in this context precisely because the

philosophical provenance of the term connotes for contemporary thinkers a concept of

flourishing that is historically specific, emerging from a particular cultural context” (p. 247,

n59). It is not clear, however, that medicine is indeed in the business of promoting happiness

or takes happiness as one of its proper goals or objects.29 Furthermore, it is also not clear

that the DSD nomenclature or treatment model itself actually promotes human flourishing

defined in terms of happiness, or that such a definition of human flourishing places it on the

side of the natural. One could turn (although Feder does not do so explicitly) to the work of

Neo-Aristotelian philosopher Martha C. Nussbaum and her Capabilities Approach, in an

attempt to cash out this point. Nussbaum has been described as having “pioneered a modern

version of how the eudaimonia approach in practical philosophy can be employed, both in

ethics and politics” and identifies the Capabilities Approach as an attempt to “give shape and

content to the abstract of dignity,” using the Aristotelian notion of eudaimonia as a ground

upon which she can constitute a robust account of the good (as opposed to thinner accounts 29 One might object that psychiatry takes one of its goals as the promotion of happiness in its management of mental illnesses such as depression or anxiety. However, I would argue that psychiatry is not in the business of promoting happiness, but rather, of reducing the symptoms of psychiatric illness in order to restore normal social function and alleviate distress (indeed, as I discuss in Chapter 4, psychiatric disorders are defined in terms of the distress and impairment to social function their symptoms cause). Not being depressed, rather than happiness, is the goal in the treatment of clinical depression. Just as with other pathologies, mental health is defined in terms of the absence of pathology.

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provided within the social contract tradition)(Brukamp, 2001, p. 93). Nussbaum identifies

ten central human capabilities as the “central requirements of a life with dignity”—Life;

Bodily Health; Bodily Integrity; Senses, Imagination and Thought; Emotions; Practical

Reason; Affiliation; Other Species; Play and Control over One’s Environment—that she

argues are “mutually supportive and all of central relevance to social justice” such that no

one capability can come at the expense of others (Nussbaum, 2006, pp. 75-77).

In relation to Nussbaum’s account, it seems Feder defines human flourishing fairly

thinly, equating it with what Nussbaum refers to as Bodily Health, defined as “being able to

have good health, including reproductive health; to be adequately nourished; to have

adequate shelter” (Nussbaum, 2006, p. 76). However, given that infants continue to be

subject to unnecessary genital normalizing surgeries as well as sterilizing gonadectomies

under the DSD treatment model, it is unclear that the DSD model actually manages to

promote this capability. Furthermore, it seems to diminish other capabilities such as that of

Bodily Integrity, which for Nussbaum includes “having opportunities for sexual satisfaction

and for choice in matters of reproduction” (p. 76). Finally, even if we were to grant that the

DSD treatment model did in some way promote human flourishing as encapsulated by

Nussbaum’s Capabilities Approach, it is not clear that these capabilities are in some way

either medical or natural. While Bodily Health may fall under the purview of medicine, I am

not sure that many of the others do. Furthermore, many of these, like Play and Control over

One’s Environment, Affiliation, and even Bodily Integrity are socially, culturally, and

historically constituted, generated through our relations with others (for example, arguments

for women’s reproductive freedom occur in a particular social and political context).

Feder’s attempt to separate matters of health and human flourishing from cultural

concerns is clearly under-theorized, and even this small scratch on the philosophical surface

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reveals the two spheres to be far more intimately entangled than her arguments presume.

Her failure to define health is likely a function of its negative definition within philosophy of

medicine in terms of the absence of pathology. It is instructive, then, to read both this

argument and the failure of DSD as a strategy through biomedical accounts of pathology

and the binary logic of nature/culture underwriting them. In the following section of this

chapter, I argue that those who strategically endorsed DSD through the adoption of a

biomedical model of intersex conditions were forced to make a number of problematic

theoretical commitments—specifically, to an objectivist theory of pathology and the

nature/culture distinction it entails; to the binaries of impairment/disability and sex/gender

that follow from this nature/culture logic; and finally, to an understanding of power which

Michel Foucault refers to as sovereign or juridico-discursive. These theoretical

commitments, which I further argue have framed the majority of analyses of DSD since its

adoption, ultimately misrepresent both the way in which modern medical/knowledge power

works in terms of identifying individuals as objects of medical study and intervention through

their pathologization, and the unique place that the management of intersex conditions holds

in the historical development of modern medicine.

III. Diagnosing DSD’s Failure (or Nature/Culture, Sex/Gender, and Impairment/Disability)

At the heart of DSD’s failure sits the binary logic of nature/culture that those who

strategically endorsed it were forced to commit to when they adopted a biomedical model of

intersex conditions as DSDs. This is because underwriting that biomedical model is an

Objectivist or so-called “Naturalist” model of disease in general, and of the pathology of

intersex conditions in particular, which conceive of pathology as “an objective,

transhistorical and transcultural entity of which modern bio-medicine has acquired

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knowledge and understanding and which it can accurately represent” (Tremain, 2001, p.

617).30 Objectivism regarding impairment entails an implicit commitment to the binary

nature/culture distinction where pathology is defined with regards to the natural

physiological functioning (or malfunctioning) of the organism, while disability is confined to

the cultural, in terms of the temporally and culturally specific ways in which we value and

treat those who exhibit various forms of function. The classic example of this distinction,

which defines the social model of disability, is that while not having the use of one’s legs is

indeed an impairment, it is the presumption that everyone can walk and the concomitant

devaluation of bodies that cannot which is disabling.31

It is this objectivism regarding pathology, and the binary logic of nature/culture it

entails, that underwrites, authorizes, and legitimates the fourth type of argument DSD

proponents have made: that we separate properly biomedical or natural issues of health and

“human flourishing” from sociopolitical or cultural issues like gender and identity (either

implicitly in the case of Dreger & Herndon, 2009 or explicitly in the case of Feder, 2009a).

For example, while Feder grants “that the medical cannot be neatly disentangled from the

social” she argues that many

can nevertheless agree that there are distinctions between the cultural issues of identity in

which medicine has intervened and narrower matters of health [emphasis added], be they

urgent in the case of a newborn with salt-losing CAH, or longer term, as is the case

with different kinds of hormone replacement or special vulnerabilities to other

30 Though both terms strike me as problematic, I will limit myself to the term Objectivist as I believe Naturalist is even more of a misnomer in this context and is invoked merely for its rhetorical weight. 31 The Social Model of disability was developed as a challenge to the individual or medical model of disability, which failed to distinguished between disability and impairment, taking both as “the unfortunate consequences of a personal attribute or characteristic”(Tremain, 2001, p. 630).

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conditions of the lifespan. Proponents for ‘demedicalization’ of intersex conditions

have focused principally on social issues and have not considered seriously the fact

that attention to the important needs of affected individuals to receive health care

attentive to their conditions is something that requires the application of a “pathologizing”

term, be it disease, disorder, or injury—the only categories that authorize medical intervention

[emphasis added] (Feder, 2009a, pp. 238-239).

Commitment to the kind of binary logic characteristic of objectivist accounts of disease and

the social model of disability and at work here in Feder’s distinction between “natural” issues

of health and “cultural issues of identity” is problematic for number of intimately related

reasons, particularly where intersex conditions and their management are concerned.

First, commitment to the nature/culture binary paves the way for a number of other

binaries that follow from it, most obviously impairment/disability, but also sex/gender as

well, with impairment and sex taken as natural objects and disability and gender as socially

constructed objects. Evidence of the emergence of both of these binaries can be found in the

organizational discourse of the ISNA and in the arguments of those former critics who came

to strategically endorse DSD. Commitment to the binary logic of impairment/disability is

perhaps most obvious under DSD, and is evinced by the disappearance of critiques of the

pathologization of intersex conditions from a scholarship and activism that was founded on

such critiques, and the eventual emergence of positive arguments for the “repathologization”

of these states in order to meet the unspecified medical needs of those who suffer them. The

clearest version of this is likely Feder’s (2009) argument that we should focus on and address

the concrete medical needs of those with intersex conditions rather than cultural concerns of

gender and identity. On this argument, what is disabling are those interventions aimed at

fixing culturally constituted pathologies or concerns regarding gender and identity rather

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than natural impairments like salt-wasting, the normalization of which is positioned as

enabling. It is this final clause—that the normalization of natural impairments is enabling—

that distinguishes the unique way in which the impairment/disability binary is invoked by the

ISNA and others who have strategically endorsed DSD. This binary was first invoked by the

group in the course of its professionalization in the early 2000s, during which it reformulated

the problem of intersex in terms of the first clause of the argument above—disabling stigma

and trauma resulting from interventions which aimed at solving socially constructed, and

thus, unnatural pathologies.

Many have noted that the professionalization of the ISNA during the early 2000s

involved not only an attempt to distance itself from LGBT organizations and to depoliticize

the issue of intersex, but also a reconceptualization of sex and gender within the

organization’s discourse and an explicit distancing from the issue of gender in particular

(Preves, 2005; Germon, 2009). Germon writes that in its early years while it was still

functioning as a politicized queer activist organization, the ISNA conceptualized intersex

bodies as having a unique ontological status, quoting its 1996 online FAQ identifying the

intersexed as being “a biological uniqueness of their own form” rather than being “both

sexes in one” (Germon, 2009, p. 160). She writes,

The intersexed were positioned as one of at least three types of humans within a

discrete model of difference, a model comparable with that used to classify blood

groups, for example, where there is no obvious sense of ordering, even though each

type falls along a single axis. This was a serial rather than a supplemental concept

(Germon, 2009, p. 160).

Accompanying this conception of the intersexed as ontologically unique was a

critique of gender that was, in many ways, even more central to ISNA’s discourse in the early

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1990s (Turner, 1999). In her 1998 article “Affronting Reason,” ISNA founder Cheryl Chase

points specifically to gender and to the discordance between her gender behavior and

desires—her femininity—and her bodily sex as constitutive of her intersex identity, writing:

Who am I? I now assert both my femininity and my intersexuality, my “not female”-

ness. This is not a paradox; the fact that my gender has been problematized is the

source of my intersexual identity. Most people have not struggled with their gender,

are at a loss to answer the question, “How do you know you are a woman (a man)?”

(Chase, 1998a, p. 211).

However, as Germon writes, “by late 2002, a decentering of gender from ISNA’s official

discourse was evident. Intersex was no longer to be considered outside a strictly binary

frame; rather it had fully been co-opted into it,” such that by 2003 the ISNA’s mission

statement had been revised to specify that “intersexuality is primarily a problem of stigma

and trauma, not gender” [emphasis added] (Germon, 2009, p. 160). Germon notes that

“nowhere was this disavowal of gender as an intersex issue more obvious than in the

organization’s informational material for parents and the recommendations on how best to

raise an intersex child” (p. 160). Germon focuses her analysis on 2006’s Handbook for Parents,

which she identifies as providing a “contemporary window into both clinicians’ and

mainstream advocacy groups’ understandings of gender, and . . . the most current example

of the intersection medical and (some) activist understandings of intersex” (p. 161). Germon

concludes that by the end of the ISNA’s political transformation, the ISNA had settled on a

sex/gender distinction which she notes is slightly different from “its more usual

conceptualization where sex signifies the biological and gender the sociocultural,” though

she notes “that the more common usage underpins many of the ideas promoted by ISNA”

(p. 162). Specifically, she argues that the ISNA settles on a far more useful conception of sex

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as bipolar, with male and female constituting privileged endpoints along a continuum with

“no clear or obvious points of demarcation,” and gender as an exclusive binary of boys/men

and girls/women (p. 162). Thus, writes Germon, “the sex/gender distinction serves as the

ground upon which to make such parallel constructions,” reducing (inter)sex, once again, “to

the level of the body and only [emphasis in original] the body” (p. 162). As Alyson Spurgas

(2009) writes, once we enter the era of DSD, “the intersex individual is . . . to be understood

fundamentally as a patient [emphasis in original] and more specifically as a patient of

normative binary gender identity who happens to have [emphasis in original] a treatable (yet

never fully curable) disorder” (p. 103).

The nature/culture distinction and the binary logics of impairment/disability and

sex/gender not only structured the approach taken by those who strategically endorsed the

DSD treatment model, but further, I argue, have persisted in the aftermath of its adoption.

Adherence to these binary logics is undeniably politically useful, as they not only render

oppression on the basis of the cultural term contingent—i.e. if gender and disability are

culturally constituted, then gendered oppression and ableism could be otherwise—but they

also underwrite “born that way” arguments. Despite this acknowledgement, I follow

Germon (who joins Eve Kosofsky Sedgwick), in her position that committing to the

nature/culture binary, as well as the binaries of impairment/disability and sex/gender

constitute “expensive leaps,” particularly where intersex conditions are concerned (Germon,

2009, p. 6; Sedgwick, 1985). As politically useful as the binaries of nature/culture,

sex/gender and impairment/disability may seem to be, adherence to them limits us in

multiple ways.

First, leaving impairment and sex on the side of the natural precludes

acknowledgement of the specific, particular ways in which biomedicine has historically

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constituted impairment and “sexed the body,” as well as any analyses of how the DSD

treatment model might be continuing such projects. Within an approach that posits both sex

and pathology as pre-discursive ground and gender and disability as culturally specific

configurations, one cannot interrogate the constitution of sex or of impairment.

Furthermore, even nature, the pre-discursive ground of the initial binary, is off limits. As

Tremain (2001) writes, within such a framework, one cannot “interrogate what counts as

‘nature’ within a given cultural and historical context, in accordance with what interests,

whose interests and for what purposes” (p. 625). Indeed, as Butler reminds us, casting the

body as pre-discursive is itself a discourse. This serves to reauthorize medical power over

and epistemological interest in both impairment and sex in general as natural objects, and

over those with intersex conditions, as individuals with impairments of sex.

This, I argue, is the reason for the complete absence of any biomedical or scientific

arguments in favour of the DSD treatment model by those who strategically endorsed it. By

rendering “the impaired body the exclusive jurisdiction of medical interpretation,” the

science underwriting the treatment model and classification system fell out of the purview of

social critics; they no longer had authority to speak on the science (Tremain, 2001, p. 621).

Furthermore, there has been no critical analysis of the science underwriting the DSD

treatment model since its adoption. This lacuna is all the more striking when considered

against the fact that the science of sex differentiation (and its history) has long been of

particular interest to many feminist scholars, such as Anne Fausto-Sterling (1985, 1993,

2000), Alice Dreger (1998), Elizabeth Lloyd (2005), and Sarah Richardson (2013) among

others, as an exemplary case of the influence of sociopolitical investments on scientific

research and subsequently, medical practice.

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Finally, I argue that the nature/culture distinction has also contributed to the sense of

uncertainty that has mounted since the adoption of the DSD treatment model, as well as the

theoretical and practical limitations of those initiatives and analyses that have been offered in

its aftermath. As Tremain writes,

Both “natural sex” and “natural impairment” have circulated in discursive and

concrete practices as nonhistorical (biological) matter of the body, which is molded

by time and class, is culturally shaped, or on which [emphasis in original] culture is

imprinted. The matter of sex and of impairment itself has remained a prediscursive,

that is, politically neutral given. When we acknowledge that matter is an effect

[emphasis in original] of certain historical conditions and contingent relations of

social power, however, we can begin to identify and resist the ways in which these

factors have material-ized it (2001, p. 623).

Because of gender’s position as both natural and socioculturally mediated, this serves to

obscure the specific ways in which biomedicine produces gender, as well as to reinforce

medicine’s epistemic authority over it. As Germon (2009) writes, “by being emphatic that

intersex is not about gender, ISNA ceded to medicine the authority to produce gender. The

organization was unable ultimately to challenge the fact that [Intersex Case Management] is

done for genders, in the interests of an appropriate gender” (pp. 164-165). Thus we are

unable to acknowledge the specific history of the production of gender by John Money in

the service of grounding the treatment of intersex conditions, or consider the ways in which

the DSD treatment model continues the project of reconstituting binary gender as the

stabilizer of bipolar sex.32

32 This may, however, simply be the continuation of an already established trend, at least among feminist theorists. Germon (2009) argues that while “gender’s origins” in John

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Germon identifies five consequences of this occlusion of Money’s work, including

the ahistoricization of gender; the uncritical acceptance within feminism of the binary logics

of sex/gender, male/female, man/woman and straight/gay (to which I added

impairment/disability); and the maintenance of “an epistemological investment in sexual

difference—to the order of two” (p. 4). To this, Germon adds that failing to acknowledge

the origins of gender in the history of intersex management not only “contributes, however

unwittingly, to the ongoing status of hermaphrodites as abject: as the impossible Other,” it

also “allowed earlier poststructuralist analyses to remain firmly fixed on the discursive rather

than the material production of sex, since it sustains the idea that gender is at heart a

category of signification constituted through discourse” (p. 4).

This, I argue, is why we see a turn towards cultural or discursive analysis in the

aftermath of DSD such as Karkazis (2008) and more recently, in Feder (2014). In the latter,

for example, Feder employs Pierre Bourdieu’s concept of the habitus—the “realm of the

taken for granted, establishing that which is not questioned . . . a kind of implicit normative

order” (p. 46)— as a framework through which we can read parents’ choices in order to

explain the apparent intransigence of the practice of surgically normalizing ambiguous, if

otherwise healthy genitals. She argues that because ambiguous genitalia conflict with

assumptions about sex difference and normality, which are such a deep part of our “cultural

unconscious,” we can understand the habitus as acting through those parents who choose

normalizing surgery rather than being enacted by them (p. 46). Further, Feder convincingly

argues that these cultural assumptions concerning the normality of dimorphic sex situate and

reframe the ethical questions regarding intersex management for both physicians and

bioethicists, such that focus is on the best way surgically to normalize atypical genitals, rather Money’s work are “vaguely acknowledged in some feminist accounts, its intimate relation to the intersexed and intersex case management practices is not” (p. 3).

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than on the ethicality of such interventions in the first place (see esp. pp. 110-132). She does

not, however, consider the biomedical models of sex and gender invoked under DSD, or the

scientific evidence underwriting them, in her examination of the constitution of this “implicit

normative order” regarding sex and gender within our “cultural unconscious.”

Beyond obfuscating the genealogy of gender (and of disability), commitment to the

binary logic of sex/gender and impairment/disability serves to restrict both the causes of

and avenues for resistance to ableism and gender oppression to the level of the cultural,

often in the form of rights-based appeals such anti-discrimination initiatives and hate crime

laws. Interestingly, because both ableism and gender oppression/sexism are considered to be

discrimination or rights-based issues, the effect in terms of resistance is the same for both

disability and gender, despite the former’s status as fully socially constructed (and thus

seemingly fully demedicalized) and latter’s status as both natural and sociocultural. For the

ISNA, this was reflected in their turn away from activities like protesting and reclaiming a

politicized intersex identity and towards framing the issue of intersex management in terms

of rights (with an emphasis on children’s rights) and bioethical principles such as autonomy.

Rights-based arguments appealing to fair treatment are often accompanied by a repudiation

of essential difference or, as Germon (2009) puts it, a consolidation “around a politics of

sameness” (p. 166). In the organizational discourse of the ISNA, this cashed out as an

emphasis on intersex individuals’ status as “ordinary men and women” with regards to

gender and a reframing of the physical differences of those with intersex difference in terms

of inconsequential variations such as skin and hair colour (Koyama, 2006, para. 22; Germon,

2009, p. 166).

In Normal Life: Administrative Violence, Critical Trans Politics and the Limits of the Law,

trans* legal scholar Dean Spade (2011) argues that rights-based initiatives problematically

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appeal to what Michel Foucault calls a juridico-deductive or sovereign model of power,

which he opposes to biopower. As a result, standard rights-based law reform strategies like

anti-discrimination and hate crime initiatives “fundamentally misunderstand the nature of

power and control and the role of law in both” and subsequently fail to improve the lives of

those they seek to help (p. 101). As a result, Spade cautions trans* activists against focusing

on rights-based initiatives, arguing that they risk “recapitulating the limits of leftist, lesbian,

gay, feminist, and anti-racist politics that have centered on legal recognition and equality

claims (p. 19). He does grant that law reform strategies can and do have an important role to

play in social justice movements; however, he argues the effects such initiatives can achieve

are limited such that they should be “employed as a small part of a broader trans* struggle

that articulates demands that far exceed legal reform” (p. 101).33 Spade uses racism as an

example to argue that rights-based initiatives and the effects they can achieve are limited

specifically by the account of power they employ and their subsequent conceptualization of

harm of racism through “the perpetrator/victim dyad, imagining that the fundamental scene

is that of a perpetrator who irrationally hates people on the basis of their race and denies

service to or beats and kills the victim based on that hatred” (p. 84). The perpetrator/victim

dyad corresponds to a sovereign conception of power as deductive or subtractive, and serves

both to individualize racism, rendering its structural and systemic forms invisible, and to

obscure its historical context (pp. 84-85). As a result, not only are these initiatives

“ineffective at eradicating racism” but they “contribute to obscuring the actual operations of

racism,” making resistance to it all the more difficult (p. 84).

33 Specifically, Spade acknowledges that anti-discrimination laws provide a basis for legal claims and may “send a preventative message to potential discriminators” and that hate law crimes are similarly meant to act as a deterrent (though points out that they have not actually been shown to have a deterrent effect) (See Spade, 2011, pp. 80-82).

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Because the “systems of meaning and control that maldistribute life chances, such as

racism, ableism, transphobia, xenophobia, and sexism, among others, operate in ways more

complicated and diverse than the perpetrator/victim model allows,” Spade recommends the

centering of analyses that adopt a Foucauldian understanding of power as productive rather

than deductive (pp. 102, 101). If trans* activists hope actually to “address the violence and

marginalization that shortens trans lives” writes Spade, then it is necessary to adopt a theory

of power which actually represents “how those conditions are produced and examine[s] what

kinds of resistance will actually alter them” (p. 101). Similarly, I argue that the adoption of a

Foucauldian understanding of power and a decentering of rights-based initiatives is

necessary to improve meaningfully the lives of those with intersex conditions with regards to

not only the performance of medically unnecessary genital normalizing surgeries, but also

the shame and stigmatization experienced by many with these conditions. It will allow us to

examine both how the conditions which render intersex lives unlivable (or less livable) are

produced, and those methods of resistance that will actually have an impact on them.

Furthermore, employing a Foucauldian analysis is important because of the central role that

sex and the intersexed play in the historical consolidation of biopower as a power over life

and death. Indeed, the naturalization and materialization of dimorphic sex in the context of

the clinic through the deployment of sexuality is what allows the twin poles of biopower—

disciplinary normalization of individuals and regulatory biopolitics of populations—to

coalesce, giving rise to biopower in its current form. As a result, both the challenge to

dimorphic sex posed by intersex bodies and their clinical management play an important role

in the development of biopower, as well as the way in which it functions, both historically

and today. Thus, if I am indeed correct that the nature/culture distinction stands at the heart

of DSD’s failure as a strategy and has in fact made moving beyond DSD more difficult, then

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it seems that those with intersex conditions would be best served by Foucauldian analyses

(which begin from a rejection of this binary) and strategies informed by them, as well as

clarity regarding the history of sex and intersex with regards to biopower. Given this, it is to

this history of biopower and the medical management of intersex conditions that I turn in

the following sections of this chapter. By resituating sex, intersex, and gender, in terms of

this larger history of biopower, this genealogy of intersex will set the stage for the analyses of

and arguments about the DSD treatment model offered in the final three chapters of this

dissertation.

IV. The Constitution of Impairment and the Deployment of Sexuality

Michel Foucault is arguably best known for his account of the supersession of

sovereign power over the course of the seventeenth to early nineteenth centuries by a

“uniquely modern” form of power over “life itself” that he calls biopower. Foucault

identifies biopower as “an indispensible element in the development of capitalism,” for it

made possible the “the controlled insertion of bodies into the machinery of production and

the adjustment of the phenomena of population to economic processes” (1990a, p. 140). In

contrast to the deductive, repressive nature of sovereign power, biopower is the power to

“foster life or disallow it to the point of death,” rather than the power to “take life or let

live” (pp. 140, 138). He writes:

Power would no longer be dealing simply with legal subjects over whom the ultimate

dominion was death, but with living beings, and the mastery it would be able to

exercise over them would have to be applied at the level of life itself: it was the

taking charge of life, more than the threat of death, that gave power its access even

to the body (pp. 142-143).

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This power works, according to Foucault, by way of twin poles or registers, each with their

respective targets: 1) an anatamo-politics of the human body or disciplinary power, aimed at the

human body’s maximization and efficiency and 2) a regulatory bio-politics of the population

aimed at the management of the species body or biopolitics (p. 139).34 Foucault argues that

multiple conditions had to obtain for the emergence of these two forms of power, most

notably the emergence of the concept of bios or life itself in the work of French naturalist

and zoologist Georges Cuvier (1769-1832). In The Order of Things (1994) Foucault argues that

Cuvier “discovers” bios or life in his understanding of organic structure or the structure of an

organ in terms of the function the organ performs (pp. 263-279). As Gutting (1989) writes,

this is how “we arrive at the modern definition of a living thing as a functional system:”

In drawing up a list of species, what is of importance is no longer identities and

differences in plants’ and animals’ properties but only functional similarities in their

organs. Thus, organs (e.g. gills and lungs) that have no elements at all in common

may nonetheless be grouped together on the basis of their similar functions.

Likewise, organisms themselves will be classified on the basis of their similarities as

functional systems (Gutting, 1989, p. 190).

The emergence of this function-bound definition of life is what constitutes the break

between natural history and biology as a science of life itself for Foucault. Further, this new

concept of life is of central importance to Foucault’s understanding of biopower, for it is, as

philosopher Mary Beth Mader (2011) writes, “the discursive condition for the constitution of

a theoretical homogeneity Foucault terms a ‘biological continuum’ which is itself the

condition for the emergence of a form of state power that establishes the legitimacy of itself

34 Though Foucault and others often use biopower and biopolitics synonymously (and thus refer to the second pole of biopower as biopower), I will refrain from this convention for the sake of clarity.

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in relation to life and death on the basis of a new biological conception of race” (p. 98). In

her 2011 article “Modern Living and Vital Race: Foucault and the Sciences of Life” Mader

connects Foucault’s work on life and the biological continuum in The Order of Things to his

controversial arguments in Society Must Be Defended on racism against the abnormal. She

writes,

after the advent of the biological continuum, if the modern state wishes to kill any of

its population with alleged legitimacy, it must resort to a justification and

comprehension of this action in relation to that biological continuum. That is, the

modern state must understand its relation to the life and death of its citizens and its

population against the background of the scientifically founded homogeneity of the

human race or species that is the biological continuum (Mader, 2011, pp. 98-99).

Thus Foucault’s (2003) controversial assertion that racism, and specifically a

biological racism against the abnormal, are necessary under biopower, for “in a normalizing

society, race or racism is the precondition that makes killing acceptable” (p. 256). Racism is

the only mechanism through which “the function of death “ can be exercised under

biopower, in order to introduce interruptions into the biological continuum of life which

constitutes all members of the human race in terms of a “vital sameness” (Foucault, 2003, p.

254):

What is racism? It is primarily a way of introducing a break into the domain of life

that is under power’s control: the break between what must live and what must die.

The appearance within the biological continuum of the human race of races, the

distinction among races, the hierarchy of races, the fact that certain races are

described as good and that others, in contrast, are described as inferior: all this is a

way of fragmenting the field of the biological that power controls. It is a way of

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separating out the groups that exist within a population. It is, in short, a way of

establishing a biological-type caesura within a population that appears to be a

biological domain (Foucault, 2003, pp. 255-256).

Biological race is the way in which those lives within the biological continuum that

should be fostered are differentiated from those lives that should be disallowed until

the point of death under biopower—that is, it determines which lives should be made live or

let die. However, before biopower could function in this way, its twin registers of

disciplinary normalization and regulatory biopolitics had to emerge and then coalesce

through the deployment of sexuality via the production of a scientia sexualis, or science

of sex.

In Discipline and Punish (1995), Foucault tracks the emergence of the first of these

“registers”—disciplinary power—which he identifies with the individuating and normalizing

practices of institutions such as the school, the workshop, the prison, and the psychiatric

hospital. Disciplinary power is centered on “the body as a machine: its disciplining, the

optimization of its capabilities, the extortion of its forces, the parallel increase of its

usefulness and its docility, its integration into systems of efficient and economic controls”

(Foucault, 1995, p. 139). Disciplines are those methods “which made possible the meticulous

control of the operations of the body, which assured the constant subjection of its forces

and imposed upon them a relation of docility-utility,” marking the birth of “an art of the

human body” (p. 137). Through the measurement and continual management of the

operations of the body in relation to norms with increasing specificity, disciplinary power

attains “an infinitesimal power over the active body” (pp. 139, 137). The result is the

production of subjectivities through the means of hierarchical observation, normalizing

judgment, and “their combination in a procedure that is specific to [disciplinary power]”—

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the examination—with the aim of increasing “the forces of the body (in economic terms of

utility)” while at the same time “[diminishing] these same forces (in political terms of

obedience)” (pp. 170, 138).

In the eighteenth century, the disciplines surpassed that which Foucault calls “the

‘technological’ threshold” or the point at which “the formation of knowledge and the

increase of power regularly reinforce each other in circular process” (1995, p. 224). He

identifies the hospital as first site where this threshold is reached, writing that the disciplines

did not merely reorder the hospital (or, later, the school, or the workshop), but transformed

them into

apparatuses such that any mechanism of objectification could be used in them as an

instrument of subjection, and any growth of power could give rise in them to

possible branches of knowledge; it was this link, proper to the technological systems,

that made possible within the disciplinary element the formation of clinical medicine,

psychiatry, child psychology, educational psychology, the rationalization of labour. It

is a double process, then: an epistemological ‘thaw’ through a refinement of power

relations; a multiplication of the effects of power through the formation and

accumulation of new forms of knowledge (Foucault, 1995, p. 224).

Through objectifying clinical discourses (as well as non-discursive institutional practices)

“the body” emerged in the eighteenth century as both an effect and object of medical

knowledge/power, open to surveillance, documentation, and intervention. The birth of the

clinic in the nineteenth century, notes Tremain, only furthered the conception and treatment

of the body as a thing, as “spatial, temporal and social compartmentalization” worked in

concert with that which Foucault called “dividing practices” to refer to modes of

manipulation that combine a scientific discourse with practices of segregation and social

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exclusion in order to categorize, classify, distribute, and manipulate subjects who are initially

drawn from a rather undifferentiated mass of people” (Tremain, 2001, p. 619). These

dividing practices lead to the subjectivation of the individual in two senses: 1) the objectification

of the individual as they come to constitute an object of study and target for intervention (as

a homosexual or a criminal for example), and 2) their subjectification as the individual comes to

understand themselves in terms of the identity posited by the scientific discourse, and

perhaps even embrace it.35 As Tremain writes,

This new clinical discourse about “the body” created and caused to emerge new

objects of knowledge and information and introduced new, inescapable rituals into

daily life, all of which became indispensible to the self-understandings, perceptions,

and epistemologies of the participants in the new discourse (2001, p. 619).

It was during the second half of this same century that the second pole of biopower,

regulatory power or biopolitics, began to establish itself. Unlike disciplinary power, which

addressed “man as body,” biopolitics rather attended to “to living man, to man-as-living-

being; ultimately, if you like, to man as species . . . [to men] as they form . . . a global mass

that is affected by overall processes characteristic of birth, death, production, illness and so

on” (Foucault, 2003, pp. 242-243). In his 1975-1976 lecture series, Society Must Be Defended,

Foucault argues that biopolitics established itself during the last half of the eighteenth

century and in the first years of the nineteenth century in three domains. First, it takes up “a

set of processes such as the ratio of births to deaths, the rate of reproduction, the fertility of

a population, and so on” which Foucault characterizes as “‘biopolitics’ first objects of

knowledge and targets it seeks to control” (2003, p. 243). The second area or field which

35 Foucault eventually introduced the term subjectivation to refer to these twin processes. Prior to this, however, he used the term “assjuttissement” to refer to one’s subjection by and subjugation to power.

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biopolitics takes up towards the end of the eighteenth century is that of endemics, or “the

form, nature, extension, duration and intensity of the illnesses prevalent in a population” (p.

243). Unlike epidemics, which resulted in large numbers of sudden quick deaths, endemics

were

permanent factors which . . . sapped the population’s strength, shortened the

working week, wasted energy, and cost money, both because they led to a fall in

production and because treating them was expensive. In a word, illness as

phenomena affecting a population. Death was no longer something that suddenly

swooped down on life—as in an epidemic. Death was now something permanent,

something that slips into life, perpetually gnaws at it, diminishes it, weakens it (p.

244).

According to Foucault, it is the taking up of these phenomena—the biological

processes of a population and the illnesses endemic to it—that results “in the development

of a medicine whose main function will now be public hygiene, with institutions to

coordinate medical care, centralize information, and normalize knowledge” and ultimately to

medicalize the population (2003, p. 244). This focus on endemics, that is “permanent factors

. . . which sapped the population’s strength” opened to biopolitics a new field of phenomena

which Foucault describes as “universal, and some of which are accidental but which can

never be fully eradicated, even if they are accidental,” but which nonetheless have the ability

to “incapacitate individuals, put them out of circuit or neutralize them” such as “accidents,

infirmities and various anomalies” (p. 244).

Gutting emphasizes the importance of epidemic medicine and its concern with the

spread of disease through the population, to the birth of the clinic at the end of the

eighteenth and beginning of the nineteenth centuries and to the emergence of modern

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clinical medicine. Because epidemic medicine concerned itself with the spread of disease

through the population, it required, writes Gutting (1989) “the analysis of temporal series

with a view to determination of causality” unlike the then-dominant Classical “medicine of

species,” that conceptualized diseases as having essences with no temporal qualities (p. 115).

The goal of the Classical physician was to recognize a disease in its essential nature despite

the various influences that serve to mask and denature it, including the patient and their

characteristics. Thus, the “paradoxical position” that “if one wishes to know the illness from

which he is suffering, one must subtract the individual, with his particular qualities”

(Foucault, 2008b, p. 15). As a result, writes Foucault:

A medicine of epidemics is opposed at every point to a medicine of classes, just as

the collective perception of a phenomenon that is widespread but unique and

repeatable may be opposed to the individual identity of an essence as constantly

revealed in a multiplicity of phenomena (2008b, p. 29).

Subsequently, epidemic medicine required the “definition of a political status for

medicine and the constitution, at state level, of a medical consciousness whose constant task

would be to provide information, supervision and constraint” (Foucault, 2008b, p. 29),

leading to a social restructuring of medicine, beginning with the foundation of the Société

Royale de Médicine as the central medical authority in France in 1778 and the corresponding

emergence of what Foucault calls a “new medical consciousness” (2008b, especially pp. 24-

36). This new medical consciousness was uniquely collective, reconstructing medical

knowledge as a body under constant revision. As Foucault writes,

The locus in which knowledge is formed is no longer the pathological garden where

God distributed the species, but a generalized medical consciousness, diffused in

space and time, open and mobile, linked to each individual existence, as well as to the

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collective life of the nation, ever alert to the endless domain in which illness betrays,

in its various aspects, its great solid form (2008b, p. 36).

Foucault identifies this new medical consciousness with the emergence of two

“complementary myths”: first, of a “nationalized medical profession” who would attend to

the body in the way that clergy attended to the soul, and second, of “a total disappearance of

disease in an untroubled, dispassionate society returned to its original state of health,” such

that doctors would become unnecessary (2008b, pp. 36-37). These myths play “an important

role” according to Foucault, insofar as they link “medicine with the destinies of states,” such

that “the first task of the doctor is therefore political,” and thus reveal it to have a positive

status or significance (pp. 38-39). He writes,

instead of remaining what it was, the ‘dry, sorry analysis of millions of infirmities,’

the dubious negation of the negative, it was given the splendid task of establishing in

men’s lives the positive role of health, virtue and happiness. . . . Medicine must no

longer be confined to a body of techniques for curing ills and of the knowledge that

they require; it will also embrace a knowledge of healthy man, that is, a study of non-

sick man and a definition of the model man [emphases in original]. In the ordering of

human existence it assumes a normative posture, which authorizes it not only to

distribute advice as to healthy life, but also to dictate standards for physical and

moral relations of the individual and of the society in which he lives (pp. 39-40).

Armed with this positive project and a new understanding of medical knowledge,

nineteenth century medicine reformulated its understanding of health in terms of normality.

Or rather, whereas 18th century medicine concerned itself with restoring the sick individual

to health, 19th century medicine “was regulated more in accordance with normality than with

health; it formed its concepts and prescribed its interventions in relation to a standard of

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functioning and organic structure and in physiological knowledge” (Foucault, 2008b, p. 40).

Thus, it was through medicine that man came to be divided, taken up, and attended to in

term of “the medical bipolarity of the normal and the pathological” (p. 41). Foucault

emphasizes the importance of the “healthy/morbid opposition” entailed in the medical

distinction of the normal and the pathological to both “the prestige of the sciences of life in

the nineteenth century,” as well as to the development of “the science of man,” devoted to

the study of “man, his behavior, his individual and social realizations” (p. 41). This legacy

gives the science of man its unique character according to Foucault, insofar as it “cannot be

detached from the negative aspects in which it first appeared, but which is also linked with

the positive role that it implicitly occupies as norm” (p. 41).

If disciplinary power, then, is the micro-physics of biopower, regulatory power or

bio-politics is its macro-physics administering to the management of the population. Further,

while regulatory power is necessarily bound up with disciplinary power and vice versa (for

bodies make up populations and populations are collections of individual bodies), Foucault

remarks that the development of these twin registers remained fairly separate through the

eighteenth century. However, they would come to be joined in the nineteenth century, not at

the level of “a speculative discourse, but in form of concrete arrangements” of which the

deployment of sexuality would be “one of the most important” (Foucault, 1990a p. 140). In

Society Must be Defended, Foucault elaborates on the “privileged position” sexuality occupies in

the history of biopower, writing that sexuality was a “field of vital strategic importance” to

its constitution due it its existence at “the point where the body and the population meet”

(2003, pp. 251-252). Central to this elaboration and deployment of sexuality was the

materialization and naturalization of dimorphic sex, “the most speculative, most ideal and

most internal element in a deployment of sexuality organized by power in its grip on bodies

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and their materiality, their forces, energies, sensations and pleasures” (Foucault, 1990a, p.

155). Sex, writes Foucault (1990a),

was at the pivot of the two axes along which developed the entire political

technology of life. On the one hand it was tied to the disciplines of the body: the

harnessing, intensification, and distribution of forces, the adjustment and economy

of energies. On the other hand, it was applied to the regulation of populations,

through all the far-reaching effects of its activity. It fitted in both categories at once,

giving rise to infinitesimal surveillances, permanent controls, extremely meticulous

orderings of space, indeterminate medical and psychological examinations, to an

entire micro-power concerned with the body. But it gave rise as well to

comprehensive measures, statistical assessments, and interventions aimed at the

entire social body or at groups taken as a whole. Sex was a means of access both to

the life of the body and the life of the species (pp. 145-146).

The deployment of sexuality, then, is what establishes the notion of sex, as

something more than “bodies, organs, somatic localizations, functions, anatamo-

physiological systems, sensation, and pleasures” and with its own intrinsic properties and

laws (2003, p. 153). However, it is the numerous functions that sex performs that, according

to Foucault, make it “indispensable.” It is sex that,

Made it possible to group together, in an artificial unity, anatomical elements,

biological functions, conducts, sensations, and pleasures, and it enabled one to make

use of this fictitious unity a causal principle, an omnipresent meaning, a secret to be

discovered everywhere: sex was thus able to function as a unique signifier and as a

universal signified (1990a, p. 154).

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As the ground for a connection between “a knowledge of human sexuality and the

biological science of reproduction,” the “artificial unity” of sex allowed the study of sexuality

as a field of knowledge to gain “through proximity a guarantee of quasi-scientificity” and

further, allowed “some of the contents of biology and physiology [to] . . . serve as a principle

of normality for human sexuality” (1990a, 154-155). Further, sex brings about, according to

Foucault “a fundamental reversal” in “the representation of the relationships of power to

sexuality,”

causing the latter to appear, not in its essential and positive relation to power, but as

being rooted in a specific and irreducible urgency which power tries as best it can to

dominate; thus the idea of “sex” makes it possible to evade what gives “power” its

power: it enables one to conceive of power solely as law and taboo. Sex—that agency

which appears to dominate us and that secret which seems to underlie all that we are,

that point which enthralls us through the power it manifests and the meaning it

conceals, and which we ask to reveal what we are and to free us from what defines

us—is doubtless an ideal point made necessary by the deployment of sexuality and

its operation (1990a, p. 155).

The deployment of sexuality as well as the discursive and material production of the

“fictitious unity” of sex were achieved through the production of a scientia sexualis or a

science of sex. Biomedical knowledge of the sexed body revealed its truth and it was by way

of and with reference to this knowledge that discipline and regulation functioned. However,

the production of sex is simultaneously the production of abnormal sex; indeed, the creation

of the “truth” of the sex renders all that fails to accord with this truth as not simply false, but

unintelligible, excess. As Foucault writes,

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It is through sex—in fact, an imaginary point determined by the deployment of

sexuality—that each individual has to pass in order to have access to his own

intelligibility (seeing that it is both the hidden aspect and the generative principle of

meaning), to the whole of his body (since it is a real and threatened part of it, while

symbolically constituting the whole, to his identity (since it joins the force of a drive

to the singularity of a history) (1990a, pp. 155-156).

Furthermore, the creation of sex is the way in which “the deployment of sexuality

established one of its most essential internal operating principles: the desire for sex”—that

is, the incitement to produce knowledge about sex “to have it, to have access to it, to

discover it, to liberate it, to articulate it in discourse, to formulate it in truth” (p. 156). He

continues,

It is this desirability of sex that attaches each one of us to the injunction to know it,

to reveal its law and its power; it is this desirability that makes us think we are

affirming the rights of our sex against all power, when in fact we are fastened to the

deployment of sexuality that has lifted up from deep within us a sort of mirage in

which we think we see ourselves reflected—the dark shimmer of sex (1990a, pp.

156-157).

Intersex bodies, in their failure to accord with standard biomedical definitions of male

or female, have threatened the naturalness of dimorphic sex underwriting the

deployment of sexuality since the first constitution of a science of sex. Historically,

biomedical response to this threat has been the incorporation of these bodies within the

“truth” of dimorphic sex, either through the medical discovery of the individual’s true

sex, or by rearticulating biomedical definitions of male and female such that an

individual’s true sex may be identified, followed by individual correction/normalization

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justified by way of this “truth.” As Tremain writes, “an array of scientific, medical and

social discourses must be continuously generated to refresh [sex’s] purportedly

definitive criteria”—particularly in the face of intersex bodies and the challenge they

pose to “the regulatory force of knowledge/power about the category of sex” (2001, p.

628). Dreger (1998) documents historical shifts in biomedical definitions of sex (and

subsequently, in biomedical practices regarding abnormal sex) spurred by those bodies

for which established definitions could not account. Dreger argues that these discursive

shifts generally entail a reclassification of “abnormally” sexed bodies so as to create a

more inclusive definition of determinate binary sex, such that more people could

become intelligible as “truly” male or female. For example, in 1876, German physician

Theodor Albrecht Klebs initiated a shift in biomedical truth-discourses of sex, ushering

in what Dreger calls the “Age of Gonads” with the publication of his classification

system for hermaphroditism in the Handbuch der Pathologische Anatomie (Dreger, 1998, p.

145). Through his classification of individuals with both an ovary and a testicle as “true

hermaphrodites,” those with testicles as “male pseudo-hermaphrodites” and those with

ovaries as “female pseudo-hermaphrodites,” Klebs sedimented the truth of sex in

gonadal makeup (Dreger, 1998, p. 145). It did not matter how masculine or feminine

one appeared or behaved, what one’s genitals looked like, or even where their gonads

were located—if they had two ovaries they were a woman and two testicles they were a

man. Furthermore, the limitations of surgical techniques at the end of the nineteenth

century (in particular, the limited availability and reliability of anesthetic) meant that

gonadal makeup and thus, true sex, could only be diagnosed post-mortem. The true

hermaphrodite—the individual with both an ovary and a testicle—could exist only in

death. Of the gonadal definition of sex Dreger writes,

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It accomplished the desired preservation of clear distinction between males and

females in theory and practice in the face of creeping sexual doubt. The practical

result of the adoption of the gonadal definition was that most bodies, no matter how

ambiguous looking or acting, were entitled only to a single sex, and “true” living

hermaphrodites were—by definition—impossible (1998, p. 153).

This approach aligns with Foucault’s characterization in Discipline and Punish of the

way in which disciplinary power “traces the limit that will define difference in relation to all

other differences, the external frontier of the abnormal” so as to create a class which, like the

shameful class of the École Militaire in his example, exists “only to disappear” (Foucault,

1995, pp. 183, 182). The authoritative medical deployment of sexuality required a clear and,

importantly, natural distinction between males and females; all bodies must be rendered (or

renderable) as “naturally” male or female in order to maintain sex in its fictitious unity.

However, as advances in surgical and microscopy techniques and the development

and availability of anesthetic allowed for living biopsies, clinicians found themselves faced

not only with living “true hermaphrodites” but further, with the fact that some gonads were

neither fully ovaries nor fully testes, but rather ovotestes, a combination of both.

Furthermore, as technological advancements in biomedicine in the early part of the

twentieth century allowed for the increasingly specific elaboration of the bodies of the

intersexed, the fictitiousness of sex—of its unity—was drawn into relief. As Germon writes,

Together, the emergence of embryology as a branch of medicine; the discovery and

isolation of estrogen, testosterone, and other hormones through the field of

endocrinology; and the consolidation of genetics as a field of biology produced

evidence that the various physiological markers of sex could no longer be assumed to

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be unilateral. Nor could a person’s somatic sex be relied upon as an absolute (2009,

P. 33).

Germon notes the existence of a hesitancy within the medical literature regarding sex

assignment for intersex patients during the 1920s-1940s, though the refinement of surgical

techniques during WWII meant that by the mid-1940s, clinicians were more capable of

normalizing intersex bodies, and more uncertain about how to justify it than ever before (p.

34). The solution to this uncertainty was provided in the mid-1950s by Dr. John Money and

his colleagues in the Psycho-Hormonal Research Unit at John Hopkins University with the

introduction of gender into the field of biomedical knowledge/power constituted by the

deployment of sexuality as a “a new conceptual realm of sex” (Germon, 2009, p. 23).

Money’s search for a “single over arching term that would enable him to discuss the

masculinity and femininity of the intersexed” led him to introduce gender into his

“framework for understanding the phenomenon of human hermaphroditism,” which was

itself, writes Germon, “first and foremost a rationale for clinical practices designed to

habilitate the intersexed into girlhood and boyhood, womanhood and manhood” (pp. 24,

23). With the introduction of Money’s OGR treatment model, clinicians were no longer

“compelled to discover a person’s true sex; now their job involved determining a best sex for

each of their patients” (p. 24). Gender, writes Germon, operated both “symbolically and

[emphasis in original] pragmatically” (p. 34) and its introduction into this field of

knowledge/power had “specific consequences—epistemological and material—for those in

whose name gender was initially put to work” (p. 24):

At a pragmatic level, gender provided a solution to the uncertainty of any absolute

somatic sex. Gender served to stabilize what advances in medical technology had

rendered more and more unstable during the first half of the twentieth century. It

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was no longer so important that the somatic signifiers of sex failed to align; what

increasingly mattered were the psychosocial and cultural signifiers of masculinity and

femininity. Where once clinicians sought to discover a true sex hidden within an

ambiguous body, now it was a matter of determining a best sex for any given

individual—that is, whichever sex seemed most appropriate in light of the person’s

genital appearance, psychological makeup and familial environment. The promise

was that a best sex would give a person the best kind of life. In this way, gender

provided a solution to an unintended consequence of technological advancement

and, at the same time, to the sociocultural problem of “excessive” sexual difference”

(p. 35).

In the next section, I examine the historical production of gender by Money

through the OGR treatment model for intersex conditions. Gender allowed the

fictitious unity of sex to remain intact in the face of the intersex body by allowing us to

read binary sex on to it in terms of best or optimum gender. As I will show, Money’s

account of gender development includes multiple natural and sociocultural variables

from sex chromosomes and prenatal hormone exposure to sex of rearing; however,

optimum gender under OGR is defined specifically in terms of cisgender. In this

sense, the production of gender by Money is simultaneously the production of

cisgender as normal and trans* or variant gender as pathological, and thus OGR aims

at securing cisgendered futures for intersex children, or the production of cisgendered

lives.

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V. John Money and the Production of Dimorphic of Sex via Binary, Univocal Gender

Born in New Zealand in 1921, John Money received two double Master of Arts

degrees in psychology/philosophy and education at the Victoria University of Wellington in

1944 and following a period at the University of Otago as a Junior Lecturer, emigrated to the

United States in 1947 (Germon, 2009, p. 25; Ehrhardt, 2007, p. 223). After a year spent as a

clinical psychologist in Pittsburgh, Pennsylvania, Money entered the Ph.D. program in

clinical psychology through the Department of Social Relations at Harvard University and

completed his dissertation titled “Hermaphroditism: An Inquiry into the Nature of a Human

Paradox” in 1952 (Money, 1952; Ehrhardt, 2007; Rubin, 2012, p. 894). It was during the

course of this doctoral research that Money began to both formulate the theories that would

come to underlie the OGR treatment model for intersex conditions and make the

professional relationships that would later help to secure his position as “the leading

authority on hermaphroditism during the second half of the twentieth century” (Germon,

2009, p. 24).

Money’s doctoral dissertation involved a comparative review of 248 case studies of

intersex patients written in English between 1895 and 1951, as well as 10 additional detailed

case studies written by Money himself on the basis of patient interviews, psychological tests,

and clinical files (Germon, 2009, p. 26). Money (1952) begins his study of hermaphrodites,

whom he identifies as “a living paradox, providing invaluable materials for the comparative

study of body morphology and physiology, rearing and psychosexual orientation” (p. 1) by

sorting the cases into the following 8 categories, expanding the schema introduced by

Theodor Albrecht Klebs in 1876 on the basis of gonadal makeup:

1. Female pseudohermaphrodites with the adrenogenital syndrome characterized by precocious virile development

2. Female pseudohermaphrodites with ovogenesis and without post-natal virilization

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3. True hermaphrodites with ovarian and testicular structures 4. Male pseudohermaphrodites with Mullerian organs differentiated and

developed 5. Male pseudohermaphrodites with atrophic, undescended testes, but

simulant females in their morphology 6. Pseudohermaphroditic males with hypospadias and breasts, resembling

Klinefelter’s syndrome 7. Pseudohermaphroditic males with penoscrotal or perineal hypospadias 8. Miscellaneous cases, unclassifiable owing to insufficient data (Money, 1952,

pp. 2-3). Money approached his so-categorized case reports with two primary research

questions. The first, writes Money, concerned “the manner in which these people adapt

themselves to the sex of their rearing, especially when their bodily form and physiology

contradict it” (p. 3). Tied to this first question, notes Germon were a “set of secondary

questions about the relative influences of physiological functioning and socialization (vis-à-

vis nature versus nurture) and how enduring the impact of each of these was” (2009, p. 28).

The second research question focused on the mental health status of

[t]hese people who so often appear ludicrously dressed in the clothes of the wrong

sex. Do they, with such manifest sexual problems to contend with, break down

under the strain as psychiatric theory may lead one to believe; or do they make an

adequate adjustment to the demands of life? (Money, 1952, p. 3)

Money was undeniably pessimistic regarding the mental health of those with intersex

conditions when he began his research. For example, his scale for analysis had only three

points, in descending order of psychosocial success: 1) Adequate, 2) Disheartened and/or

guardedly reticent, and 3) Manifesting symptoms of psychopathology—psychoneurosis,

organic and nonorganic psychosis (Money, 1952, p. 4). However, as many others have noted,

including Germon, the results of Money’s research failed to support his initial pessimism. As

Money writes,

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The findings are somewhat disconcerting, for one would not have been surprised

had the paradox of hermaphroditism been a fertile source of psychosis and neurosis.

The evidence, however, shows that the incidence of so-called functional psychoses in

the most ambisexual of hermaphrodites—those who could not help but be aware

that they were sexually equivocal—was extraordinarily low. The incidence of

neurotic psychopathology of the classic types, sufficiently severe and incapacitating

to be unmistakable, was also conspicuously low. . . . Apparently, therefore, sexual

conflicts and problems are not in themselves sufficient to induce psychosis or

neuroses (p. 6).

Furthermore, Money’s research undermined theories that posited what he referred to

at the time as “nonlibidinal orientation and demeanor,” referring to one’s social role in terms

of behavior, and their “libidinal orientation” in terms of sexuality, as instinctually or

biologically driven. Instead, Money found that while “presence or lack of libido is clearly a

function of the presence [of] sex hormones, regardless of their biochemical structure or their

source of origin,” the evidence nonetheless

weighs heavily . . . against the conception that individual erotic preferences—the

direction and goal toward which libido is exercised—bear a direct or precise

relationship to unlearned determinants. It does not appear feasible to ascribe these

aspects of libido to a basis which is commonly described as constitutional or

instinctive, organic or innate, unless it be specifically in terms of the localization of

erotic sensation in the genitalia. The evidence weighs even more heavily against the

conception that the more general aspects of sexual outlook and sexual behavior—in

contrast to the specifically erotic aspects—bear a direct or precise relationship to

unlearned determinants. In brief, it appears that psychosexual orientation bears a

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very strong relationship to teaching and the lessons of experience and should be

conceived as a psychological phenomenon (1952, p. 5).

During the course of his doctoral studies, John Money came to develop relationships

with many physicians involved in the treatment of hermaphrodite patients—most notably

Lawson Wilkins, the individual widely regarded as the founder of the field of pediatric

endocrinology and for whom the American pediatric endocrine society is named (Germon,

2009, p. 31). Money’s association with Wilkins was central to not only Money’s later

professional success, but also to the stronghold Money’s theory of gender acquisition and his

OGR treatment model had for decades over the domain of clinical practices that make up

intersex clinical care. After meeting at a pediatric seminar in Boston, Money visited the

endocrinology clinic at John Hopkins Medical of which Wilkins was both Chair and founder

(Germon, 2009; Feder, 2014). Wilkins, whose research focused on the role of hormones in

fetal development, granted Money access as a doctoral student to not only his own

unpublished case studies, but also his patients, some of whom Money interviewed as part of

his doctoral research. Germon notes that it was due to Money’s relationship with Wilkins

that Money was offered a position at John Hopkins in 1951, prior to his completion of his

doctoral studies (Germon, 2009, p. 31; Money, 1986, p. 8; Money, 1993, pp. 94-95). Money

took up the position of co-director of the newly established Psycho-Hormonal Research

Unit along with psychiatrist Joan Hampson upon completion of his doctoral studies in 1952,

further testifying to Wilkins’ confidence in Money (Germon, 2009, p. 31).

In 1955, after presenting their ideas at pediatric conferences in the United States and

Europe, Money and Hampson (along with, eventually, her husband John Hampson)

published a series of consecutive articles in The Bulletin of the John Hopkins Hospital that further

elaborated and “crystallized the ideas Money had articulated in his doctoral dissertation”

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(Germon, 2009, pp. 24, 31). In these articles, Money laid out his theory of gender role and

hermaphroditic development, guidelines for clinical treatment and tools for measuring the

success or failure of that treatment; it was, “effectively . . . a complete package that included

a theory that served as a rationale for a set of clinical practices and a means of measuring not

the efficacy of those practices but rather people’s capacity to be [emphasis in original] the

gender to which they were assigned” (Germon, 2009, p. 18).

Money’s theory of gender encapsulated what we today would distinguish as gender

identity (an individual’s sense of self), gender role or behaviour (public manifestations of

one’s gender identity, as well as sexual orientation, and was first introduced in his 1955

article in the Bulletin of the Johns Hopkins Hospital titled “Hermaphroditism, Gender and

Precocity in Hyperadrenocorticism: Psychologic Findings” (Money, 1955). In a 1995 book

chapter titled “Lexical History and the Constructionist Ideology of Gender,” Money writes

that it was in this 1955 paper that,

the word gender made its first appearance in English as a human attribute, but it was

not simply a synonym for sex [emphases in original]. With specific reference to the

genital birth defect of hermaphroditism, it signified the overall degree of masculinity

and/or femininity that is privately experienced and publicly manifested in infancy,

childhood, and adulthood, and that usually though not invariably correlates with the

anatomy of the organs of procreation (Money 1995, pp. 18-19).

Rubin (2012) argues that Money’s further study of intersex patients at John Hopkins, along

with advances in technology, led him “to the hypothesis that biological sex is itself radically

unstable, composed of heterogeneous elements that do not add up to a conceptual entity”

(p. 895). Rubin supports his claim by citing the passage from Money’s 1995 book chapter

quoted above in which Money describes abandoning “the unitary definition of sex as male or

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female” and introducing gender-role as a name for that “unnamed blank that craved a name”

at the end of his list of the variables of sex (Money, p. 21).

Tremain writes that despite “concluding that sexed identity had no instinctual or

innate basis” as is clear from the long list of variables Money identifies as determining sex,

he nonetheless identified intersex bodies as abnormal and in need of fixing (2001, p. 628).36

Money held that hermaphroditic bodies were the result of improper differentiation of the

sex anatomy: “the [intersex] baby is, in other words, sexually unfinished” (Money &

Ehrhardt, 1972, p. 5). Rubin notes that two presuppositions ground this claim that are

“fundamental to the logic of normalization Foucault discusses as emerging in the late

eighteenth century in Abnormal,” during the time when hermaphroditism comes to be

understood as a “defective structure” rather than a “breach of nature” (2012, pp. 893-894).

First, sex anatomy has a “proper mode of differentiation that, second, constitutes a complete

or finished form of sexual dimorphism” (p. 893). Rubin writes, “in accordance with this

view, Money and [co-author of the 1972 textbook Man and Woman, Boy and Girl Anke E.]

Erhardt’s understanding of intersex was not only pathologizing but also structured by a

spatial and temporal logic of human development whose telos is wholeness” (p. 893). Rubin

argues that the concept of gender role allowed Money to “cover over and displace the

biological instability of the body he discovered through his research on intersex,” and

furthermore, provided a method by which clinicians might achieve that wholeness (p. 887).

Drawing on Hausman (1995) and Germon (2009), Rubin argues that gender role served as

both 36 Feder (2014) draws on work by historians Sandra Eder and Alison Redick to argue that the contradiction inherent in Money’s treatment model—that is, his insistence that intersex bodies required surgical normalization despite his findings that those without surgery did pretty well psychologically—is the result of his attempt to reconcile the differing conceptual, generational, and disciplinary approaches to intersex of his two mentors at John Hopkins, Wilkins, and urologist Hugh Hampton Young (2014, see Chapter One in particular).

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a diagnostic category and treatment protocol for patients whose anatomical

configurations were regarded as unintelligible within the dominant frame of

dimorphic sex. For people with intersex characteristics, whose bodies Money

read as improperly sexed, gender role [emphasis in original] became a way for

Money to predict and . . . to literally fashion the sex they were “supposed” to

have all along (p. 892).

Money, writes Rubin, “dismantled the unitary conception of sex and, in so doing, produced

‘an unnamed blank’ at the site of the body” that he filled with gender in order to “contain

the threat” this dismantling posed (p. 895). By using gender role “to name and thereby

semantically fill (or cover over) the void left by sex’s lack of conceptual and referential

unity,” he maintained the fictitious unity of sex and kept the agency of sex intact (p. 895). As

Germon (2009) writes,

In a clinical context gender proved to be a powerful stabilizing factor at a time when

technology was increasingly undermining the long-held medicoscientific assumption

that the bodily signifiers of sex aligned unilaterally. And then it became a stabilizing

factor in a broader social context. Gender served to substantiate the idea that one’s

identity and behaviors were natural and inevitable products of one of two natural and

inevitable types of bodies: male and female. In this way, gender can be read as the

most recent historical apparatus to contain the body within a political economy of

dimorphic sexual difference (p. 62).

Money’s method of naturalizing dimorphic sex by introducing gender into the field

of power/knowledge constituted by the deployment of sexuality ended the Age of Gonads

where one’s “true” sex was defined in terms of their gonadal makeup and, via the OGR

treatment model, ushered in what Dreger calls the “Age of Conversion,” where one’s sexed

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body is medically normalized in accordance with predicted gender role (Dreger, 1998).37 In

this way, Money didn’t simply propose gender as preceding sex long before Butler, as Rubin

states, but rather constituted the specific configuration of the heterosexual matrix she

identifies and undermines, with sex—the purportedly stable ground for gender and

heterosexual desire—emerging as the phantasmic effect of a specific domain of medical

knowledge/power (Rubin, 2012, p. 896). Furthermore, it is through the functioning of this

form of power, along its twin axes of discipline and regulation, and the constitution of the

heterosexual matrix via a scientia sexualis or a science of sex, gender and sexuality, that

Western subjects have come to be fashioned such that sex remains central to our

intelligibility as subjects—we do not have a sex, but rather are male or female. With Money,

this truth of sex comes to be read through binary, univocal, oppositional gender such that gender

becomes the essential pivot upon which our intelligibility as subjects rests. Sex is gender all

along and the goal of intersex management is thus to fix sex with regards to gender in order

to secure a cisgendered future for the intersex infant—one that, as Butler says, is “produced

by the regulation of attributes along culturally established lines of coherence” in terms of not

only identity, but presentation (part of which is having a “normally” cis-sexed body),

behavior or role, and desire as well (1990, pp. 32-33). As a result, intersex conditions and

their management in the clinic are necessarily an issue of gender, identity, and pathology

insofar as the “health” of the intersex patient is measured in terms of gender and identity.

37 This would eventually come to be limited to gender identity, however, as I argue in chapter three, there remains some slippage within the DSD treatment model between gender identity, gender behaviour and gender presentation. This slippage seems coherent with contemporary common sense use of the term in the West, particularly where gender identity and presentation are concerned. Indeed, I would argue that while feminism has done much to loosen the tie between gender identity and many socially constructed behaviours or interests (e.g. women can be pilots/doctors/scientists/engineers too), we continue to take gender presentation as a sign of gender identity (i.e., those who present as women identify as women).

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Intersex management is about the securing of cisgendered lives through their surgical and

hormonal production. As a result, I argue that any approach to intersex premised upon the

separation of these issues—gender, identity and pathology—was (and is), always already,

doomed to failure.

VI. Conclusion In this chapter, I argued that the nature/culture distinction underwriting the DSD

treatment model as a strategy is at the heart of its failure. Our concept of pathology and our

concern with it are themselves thoroughly sociopolitical, the products of a specific history of

a particular form of power Foucault calls biopower. Furthermore, the materialization and

naturalization of dimorphic sex through the deployment of sexuality is, according to

Foucault, one of the most important of those “concrete arrangements” through which the

twin poles of biopower—disciplinary normalization and regulatory biopolitics—came

together in the nineteenth century. The fact that an individual’s ability to sort into the

category of male and female remains necessary to their social, legal, and political

intelligibility, is, I argue, a reflection of the essential role sex played in the historical

development of biopower. Intersex conditions, insofar as they call into question the

“naturalness” of this binary sorting and integrity of the heterosexual matrix, cannot fairly be

rendered “disorders like any other”; our sociopolitical investment in (and the sociopolitical

effects of) our definitions of “normal” and “disordered” sex development exceeds our

sociopolitical investment in our definitions of disordered insulin production/regulation38 or

disordered thyroid function.

38 However, in light of our increasing anxiety regarding the racialized and classed “obesity epidemic,” the connections made between obesity and failed citizenship as exemplified through the identification of obesity with terrorism as exemplified by Surgeon General

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Money’s introduction of gender is merely the next stage in this deployment of

sexuality, through which a binary and natural form of sex is maintained in what Foucault

calls its “fictitious unity.” Gender is thus a technology of power, an object of study, and

normalizing intervention measured not merely in terms of identity, but also in terms of

desires and in terms of repeated stylized and behavioral manifestations in Butler’s citational,

performative sense (1990, 1993, 2004). Thus, Feder (2009a) is wrong when she argues that

those who seek to save intersexual identity are misguided insofar as the intersexual does not

exist in a manner analogous to the homosexual. The intersexual is just as real as the

homosexual in terms of existing a figure or object for study and intervention within the same

field of medical knowledge/power first constituted by the deployment of sexuality.

Moreover, the appearance of the homosexual and the production of sex are what make the

appearance of the intersexual through the production of gender possible. In this sense, not

only do they both exist, but are in a way kin, born out of the same set of networks of

knowledge/power and the same assumptions about the normality of cisgendered life (which

importantly included sexuality, given Money’s initial conflation of sexuality and gender).

Furthermore, the introduction of gender is what allows the transsexual to appear within this

field of medical/knowledge power, and thus the transsexual stands within this field in a

similar sort of relation. Of course, this is not to say that trans* people, like homosexuals and

the intersexed did not exist prior to the nineteenth century. Rather, it is to say that the

introduction of gender is what allows the transsexual to be apprehended as an object of

study and target of intervention for medicine specifically as a subject who is discordant in

terms of sex and gender. Gender stabilizes sex such that it becomes the ground across which

those who transition do so, producing the cis-alignment of sex and gender as normal and the Richard Carmona’s identification of obesity as “the terror within” and the conflation often made between obesity and Type 2 Diabetes, one could imagine a future “Diabetic Politics.”

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trans-alignment of sex and gender as abnormal or pathological. In this way, the history of

medical study of and intervention upon the homosexual, intersexual, and transsexual under

biopower has always aimed at the production of cisgendered lives. The deployment of

sexuality is thus the production of cisgendered lives as those which should be made live, and

non-cisgendered or gender variant lives as those which should be let die.

Through the arguments and histories presented in this chapter, I have argued that

activists and academics hoping to move beyond what has been achieved with the DSD

treatment model in ways that actually impact the lives of those with intersex conditions must

begin our analyses from a Foucauldian understanding of power that rejects the

nature/culture binary, as well as the binaries of impairment/disability and sex/gender that

follow from it; one that takes into account this unique position sex (and now gender) holds

within both the history of biopower’s development and its contemporary operations; one

that takes gender as the most recent technology of dimorphic sex, produced and maintained

via what Oksala (2011) identifies as the three axes of Foucault’s work, “regimes of truth

(knowledge), relations of power (governmentality), and subjectivation (forms of relations to

oneself)” (p. 210); one that takes its aim as the examination of what Foucault calls the

government or the “conduct of conduct” with regards to gender (Oksala, 2011, p. 210;

Foucault, 2007a, p. 108). During his 1977-1978 lecture series at the Collège de France,

Foucault identifies biopower with a particular type of power which he calls

“governmentality,” and which he identifies with the

ensemble formed by institutions, procedures, analyses and reflections, calculations,

and tactics that allow the exercise of this very specific, albeit very complex, power

that has the population as its target, political economy as its major form of

knowledge, and apparatuses of security as its essential technical instrument . . . [and

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with the development of] a series of specific governmental apparatuses [and] of a

series of knowledges (savoirs)(2007a, p. 108).

With regards to gender, then, I argue we must examine the DSD treatment model in terms

of the wider government of gender, in terms of the apparatuses and series of knowledges it

justifies and reinforces, the regimes of truth, the relations of power and forms of

subjectivation it reifies. In the remainder of this dissertation I begin to undertake this work.

In the next chapter, I turn to the DSD treatment model itself, reviewing the

nosological shift it brought about and its clinical recommendations, as well as the science

underwriting both. As I argued in this chapter, one of the effects of the DSD treatment

model’s adoption and the arguments offered by those who strategically endorsed it has been

a lack of critical engagement with the science. Given that we know that the frequency with

which genital normalizing surgeries are performed has not changed under DSD, the goal of

this chapter is to make clear what, if anything, has changed under DSD. Or, to put it another

way, are we, under DSD, still aiming at the production of cisgendered lives and if so, how?

As Borry et al. (2006) argue, clinical evidence is not a sufficient condition for ethical medical

decision-making, but it is a necessary one. Given this, any discussion of the ethicality of the

DSD treatment model will require clarity regarding both the clinical evidence to which it

appeals and the nature of the pathology it treats.

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Chapter Three: The Disordering of Sex Development and the (Re)Production of Cisgendered Lives

I. Introduction

The introduction of gender and the OGR treatment model for managing intersex

conditions in the 1950s are both the conditions of possibility for the emergence of

specifically cisgendered as opposed to trans* gendered (or gender variant) lives, and what

established them as normal. As a result, the aim of intersex management under OGR was

securing a cisgendered future for the intersex patient, and thus, the production of

cisgendered lives. In this chapter, I examine the DSD treatment model in light of and against

the history of biopower laid out in chapter two vis-à-vis the deployment of sexuality and of

gender, looking first at the shift in nomenclature and then at its clinical recommendations in

order to determine what—if anything—has changed from intersex to DSD. Specifically,

through my analysis of the new treatment model’s nosology and revised practical

recommendations, I seek to answer the questions of whether or not this DSD also aims at

the medical production of cisgendered lives, and if so, how?

A central component of activist and academic critiques of OGR focused on the

science underwriting the treatment model. Critics charged that not only was there inadequate

clinical evidence to justify its use, but further, whatever clinical research and/or biological

theories it did appeal to were both politically and epistemically suspect. As I established in

chapter two, a side effect of the move to DSD has been a lack of critical engagement with

the clinical and scientific research it appeals to. The biomedical model of intersex conditions

as DSDs, as well as the nature/culture binary logic it entails, reauthorized medical authority

over intersex conditions as pathologies. As result, the DSD treatment model, in terms of the

scientific research and biological theories that ground it, seem to have fallen out of the

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activist and critical, non-medical, theorist’s purview, leading to a lacuna in literature post-

Intersex/DSD. This chapter, in addition to the one that follows, aims at filling this gap.

Further, it serves as an update to the genealogy of intersex management reviewed in the

previous chapter, detailing the nature of the pathology of intersex conditions under DSD as

constituted through nomenclature and normalizing clinical practices.

I begin my analysis of the DSD treatment model with the nomenclature, which has

been one of its most controversial aspects since its introduction in 2006. As I established in

chapter two, the DSD nomenclature fails to achieve the goals of being more precise or

accurate than the intersex nomenclature it supplanted, and of incorporating or reflecting

progress made in the molecular genetics of sex differentiation. Nevertheless, it has excelled

in terms of inciting knowledge production about those with intersex conditions—even

though the production of knowledge within medical science is generally is positioned as

hinging on the identification of accurate, precise, and hence meaningful diagnostic categories.

DSD, like intersex before it, seems to be nothing more than an umbrella term, capturing a

large group of etiologically distinct conditions, each with their own unique set of symptoms,

risks, etc. In the following section, I examine a fascinating debate over the merits of the

DSD nomenclature that took place in the October 2010 issue of the Journal of Pediatric Urology

between two internationally recognized experts in intersex management and clinical

research—American pediatrician Ian A. Aaronson and British pediatrician (and Consensus

Statement co-author) Ieuen Hughes. Via this analysis, I will draw a number of conclusions,

the most important of which are that: 1) despite the historical critique of the pathologization

of intersex conditions, there remains no clear account of their pathology under DSD, despite

their reclassification specifically as disorders and 2) at the level of nosology, DSD remains

aimed at the production of cisgendered lives.

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II. How Should We Classify Intersex Disorders?

The Consensus Statement presents the DSD system of nomenclature as a

replacement for the intersex system and its problematic diagnoses of “male pseudo-

hermaphrodite,” “female pseudo-hermaphrodite,” and “true hermaphrodite” (Lee et al.,

2006, e489). It would be a mistake, however, to read the move from intersex to DSD as a

mere reclassification, or even the re-division of the same set of diagnoses on new terms.

Despite the fact that the Consensus Statement and its recommendations “rapidly achieved

widespread acceptance,” the document actually failed to “specify precisely which conditions

should be considered” DSDs (Aaronson & Aaronson, 2010a, p. 444). Further, the

comprehensive list of DSDs published in 2008 by Consensus Statement co-author Ieuen

Hughes included conditions that had not previously been considered intersex under OGR,

such as undescended testis and labial adhesions (pp. 121-122; Aaronson & Aaronson, 2010a,

p. 444).39 The inclusion of these new conditions indicates that nosologically, the move to

DSD—at least as it is officially laid out—is not a mere reclassification, but the constitution

of a new expanded category.

This nosological expansion of “who counts” from intersex to DSD is cited by Ian

Aaronson (writing with Alistair Aaronson, 2010a) in “How Should we Classify Intersex

Disorders?” as a reason why the medical community would be better served by redefining

DSD as “discordant sexual development,” rather than disorder of sex development, and that

the term should be “strictly limited to those conditions traditionally regarded as intersex” (p.

443). Further, the Aaronsons argue in this article, initiating the exchange between themselves

and Hughes, that these conditions (and individuals with them) should be sorted according to

gonadal histology or makeup rather than according to karyotype, which they state is “but a 39 Hughes is also a member of the Journal for Pediatric Urology’s editorial board.

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crude reflection of the genetic makeup, is diagnostically non-specific, and is not in itself

relevant to subsequent clinical developments” (p. 443). In place of the current karyotype-

driven nomenclature, they offer the following system of categorization based on gonadal

status:

Ovarian DSD, in which the gonads are composed of normal ovarian stroma

embedded in which are numerous follicles, thus having the potential for normal

hormonal function and ovulation.

Ovotesticular DSD, in which the gonads comprise both ovarian and

testicular tissue distributed either separately in two distinct gonads, or within a single

gonad with either a bipolar arrangement or as a diffuse admixture of ovarian and

testicular elements. The ovarian element must contain at least one well-defined

follicle. The testicular component comprises architecturally ordered tubules,

although the intervening stroma may be more abundant than normal.

Testicular DSD, in which the semeniferous tubules are normal in

configuration and cell type, although Leydig cells may be prominent.

Dysgenetic DSD, in which the tubules are disordered and often sparse, in

distinct contrast to testicular DSD, with an abundance of stromal tissue; because of

the strong propensity for such gonads to undergo malignant degeneration, we believe

this group requires classification as a distinct entity (p. 444).

The Aaronsons provide a number of arguments justifying their call for the nosological and

clinical re-privileging of gonadal status over karyotype, and for narrowing the number of

conditions captured by DSD to those previously known as intersex, including the kind of

concerns I raised in chapter two regarding its nomenclature’s failure to represent natural

kinds. In the course of making these arguments, however, the Aaronsons also unwittingly

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forward their own unique account of the pathology of intersex conditions. This account,

which I will call the Etiological-Mechanistic Account, locates the primary pathology of both

intersex conditions and DSDs in disordered function with regards to the endocrine cascade

or multi-step set of processes known as steroidogenesis, wherein cholesterol is converted by

enzymes into biologically active hormones such as cortisol, androgens and estrogens (see

figure 2 on the following page).40 According to this account, disordered function with

regards to steroidogenesis is defined either in terms of failing to produce typical or “normal”

amounts of the products of this pathway (i.e. hormones) or failing to be sensitive to them

(such as in the case of those with androgen insensitivity syndromes). For the Aaronsons, it is

the disruption in this hormone-producing pathway that gives intersex conditions the unique

ability to potentially “cause life-threatening metabolic disturbances, inappropriate physical

changes at puberty or confusion with gender identity” (2010a, p. 443) as sequelae, which is

what defines them as a kind. And as endocrine organs in which steroidogenesis takes place,

gonads and their histological makeup are a better indicator of disruption (or potential

disruption) in steroidogenesis than karyotype.

40 I am not sure the Aaronsons would approve of my characterization of their account—particularly of my inclusion of Mechanistic—however, I do so in order to signify the level at which I am defining “etiology,” for the Aaronsons and Hughes use the term to refer to different things. The Aaronsons identify etiology at the level of the endocrine cascade, writing, “ideally, the classification of medical conditions should bring together those with shared fundamental characteristics, where possible based on their etiology. Among the wide range of aberrations affecting the appearance of the genitalia, those that are caused by a well-defined error in the pathway of sexual differentiation during the first trimester clearly belong together” (2010a, p. 444). Hughes, however, identifies etiology at the level of the gene, as evident through his urging that we use the DSD classification system in as a way by which “to establish aetiology in so many examples of DSD” (which is often generally established at the level of the endocrine pathway)(2010b, p. 448).

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Figure 2. The Steroidogenesis Pathway

Note. From Paolo Zinatelli, 2014

Aaronson and Aaronson begin their article calling for the adoption of their gonadal

histology-based system of classification by acknowledging the “unease” felt by many

regarding the similarly gonad-based intersex diagnoses “true hermaphrodite,” “male pseudo-

hermaphrodite” and “female pseudo-hermaphrodite” created by Klebs in 1876. However,

they lament the privileging of karyotype status over gonadal histology they see as having

been engendered by this discomfort with gonad talk, in combination with limitations in our

molecular genetic knowledge:

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Although it is conceptually attractive from the scientific perspective to base the

classification of intersex disorders on the specific underlying genetic error, our

current knowledge in this regard is insufficiently complete to allow this to be done in

a comprehensive fashion. Recognizing these limitations, the Consensus Group

favored using the karyotype as the overarching basis for classification (2010a, p. 444).

Not only is the Aaronsons’ characterization of our knowledge of the genetic errors

underlying intersex conditions as “insufficiently complete” generous, while it may be

conceptually attractive to integrate molecular genetic knowledge into our system of

classification, it is not clear that it would be very useful. As Adam et al. (2012) note, only

about 20% of patients ever receive a molecular genetic diagnosis (p. 1341). Furthermore, in

their 2012 article “Disorders of Sex Development: Challenges for the Future,” Sarafoglou

and Ahmed (2012) write:

The perpetual challenge in the diagnosis and management of patients with disorders

of sex development (DSD), to paraphrase the adage, is that as our circle of

knowledge in the genetic mechanisms of DSD expands, so does the circumference

of darkness surrounding it (p. 2292).

They go on to say that while “new technologies (comparative genomic hybridization,

sequencing by hybridization, and next generation sequencing) are rapidly generating massive

amounts of information on the pathogenesis of DSD,” all of this information comes with

the “caveat . . . that identifying a pathogenic mutation may not predict the clinical picture

because phenotype can be highly variable, even within the same family” (p. 2292).

Beyond specific genetic mutation, basing a system of classification on karyotype is

problematic for a number of reasons according to the Aaronsons. Karyotype, they argue, is

“of limited diagnostic value because of the considerable overlap in the patterns found among

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various underlying intersex conditions,” noting that, for example, “a patient with a 46 XX

karyotype may have any of the conditions historically listed under the heading female

pseudohermaphroditism, but might also have true hermaphroditism” (Aaronson &

Aaronson, 2010a, p. 444). By comparison, they identify “the histological integrity of the

gonads and their consequent function” as “universally recognized . . . as fundamental to

normal sexual differentiation and the subsequent physiological and anatomical changes

which will occur in postnatal life” (p. 444):

Thus, those with histologically normal ovaries have at least the potential to be

sexually active and fertile women, once any underlying hormonal imbalance has been

corrected and suitable surgery carried out. Those with histologically normal testes

can be expected, in the absence of severe androgen insensitivity, to show some

virilization at puberty with enlargement of the penis, whereas those harboring both

testicular and ovarian tissue are likely to develop a conflicted phenotype at puberty as

a result of a surge in both testosterone and estrogen production. Of particular long-

term importance is the risk of the gonads undergoing malignant degeneration, this

potential being particularly high when attempted differentiation has resulted in

dysgenetic gonadal tissue (p. 444).

Evidence of the Aaronsons’ unique Etiological-Mechanistic Account of the

pathology of intersex conditions can be seen in their emphasis on the importance of gonadal

histology in terms of function over that of karyotype, specifically with regards to its

“fundamental” role in “normal sexual differentiation” (both pre and post-natally) and on the

development of a “conflicted phenotype”—ostensibly to prevent it. They identify karyotype

as of limited diagnostic value specifically because it results in failure to distinguish patients in

terms of gonadal status (i.e. true vs. pseudo-hermaphroditism) and thus, gonadal

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functionality in terms of hormone production. The Aaronsons do also identify gonad

function (and the importance of it) in terms of fertility and malignancy risk. Fertility or

malignancy risk are ultimately secondary or sequelae for the Aaronsons to the primary issue

of hormone production and securing “normal sexual differentiation” across the lifespan for

the DSD patient in terms of the development of a non-“conflicted phenotype” or a

cisgendered life. The clearest evidence of this can be seen in the conditions that the

Aaronsons seek to exclude from their reformulated category of DSD and the arguments they

provide for their exclusion.

Noting that the Consensus Statement and its recommendations have “rapidly

achieved widespread acceptance” despite the fact that the document failed to “specify

precisely which conditions should be considered under this heading” (Aaronson &

Aaronson, 2010a, p. 444) they argue that the comprehensive list of disorders later published

by Hughes (2008), problematically included “in order to be comprehensive, various

conditions (e.g. simple hypospadias, undescended testis, and micropenis on the one hand,

and cloacal anomaly variants, vaginal agenesis, and labial adhesions on the other)” (Aaronson

& Aaronson, 2010a, p. 444). Not only do none of these, according to the Aaronsons, “carry

the potential long-term complications of the conditions traditionally grouped under the

heading of intersex” (p. 444), but further, the inclusion of these conditions contradicts

common practice and understanding of intersex conditions as distinguishable (and properly

distinguished) from

other genital malformations by a clearly defined aberration in the endocrine cascade

responsible for normal development of the fetal internal and external genitalia, and

so have the potential to cause life-threatening metabolic disturbances, inappropriate

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physical changes at puberty or confusion with gender identity. In some cases, the

gonads also have the propensity to undergo malignant change (p. 443).

Infants with hypospadias and undescended testes clearly fall outside of this category, and

while micropenis can often be confused with or taken as an intersex condition, such infants,

they write, “apart from the small size of their penis, very rarely have any of the problems

common to intersex infants.” Simple labial adhesion, they argue, is also not an intersex

condition and should be “regarded as a trivial, acquired lesion which, once separated, is of

no consequence.” Further, of those more complicated conditions often requiring surgical

construction of genitalia such as cloacal anomalies and vaginal agenesis, the authors write,

“all represent complex but local developmental errors, without any identifiable underlying

endocrine disorder typical of the intersex patient” (p. 446).

Merely having atypical genitals deemed to require surgical normalization is thus,

importantly, inadequate for inclusion under DSD for the Aaronsons because these patients

rarely have “any of the problems common to intersex infants.” Here, they identify these

problems with the potential for gonadal malignancy (acknowledged to only be a risk “in

some cases”), “the potential to cause life-threatening metabolic disturbances” (which is only

necessarily true for cases of SW-CAH) and “inappropriate physical changes at puberty or

confusion with gender identity” (p. 443). These latter problems, and the atypical hormone

production posited as engendering them, are what constitute the core pathology of intersex

conditions and thus distinguish them as a kind for the Aaronsons. Both the girl with CAH-

masculinized genitals and the girl with labial adhesions may receive normalizing genital

surgeries, but the latter’s genital atypicality is trivial and “of no consequence” once separated

because they are not a sign of the kind of underlying disruption in steroidogenesis which

could lead to “inappropriate physical changes at puberty or confusion with gender identity”

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(p. 443). That is, once the genitals of the girl with labial adhesions are surgically fixed, she no

longer needs to be surveilled and managed with regards to her development as cisgendered.

Additional evidence that the Aaronsons identify the primary pathology of intersex

conditions/DSDs in the disruption of the steroidogenesis pathway can be found in their

controversial recommendation to exclude aneuploidy—(anomalous chromosome number)

related conditions like Kleinfelter’s syndrome or Turner’s syndrome, as well as those with de

la Chappelle or XX male syndrome, from the category of DSD (and retroactively, intersex).

Indeed, this is what grounds their claim that although those with Klinefelter syndrome and

those with Turner syndrome may share things in common with those with intersex

conditions (such as concerns about fertility or some phenotypic features), both conditions

“should be regarded as . . . strictly chromosomal aberration [s]” (p. 446). This is because

disruption of the steroidogenesis pathway does not necessarily result in atypical development

of internal and external genitalia—though it may. Conversely, not every instance of atypical

internal or external genital development is the result of an initial disruption of this specific

endocrine cascade (though steroidogenesis disruption that results as a sequela may

contribute to it). These latter cases do not “count” as intersex conditions (or DSDs) for the

Aaronsons and that is why they argue for the exclusion of Klinefelter’s, Turner’s, and de la

Chappelle or XX male syndrome. Though they can result in symptoms associated with

intersex conditions and even sequelae characteristic of them (that is, disruptions in

steroidogenesis), these are the result of a chromosomal abnormalities (aneuploidy in the case

of Kleinfelter’s and Turner’s, and the presence of an SRY gene on an X chromosome as a

result of unequal crossing over during meiosis for an individual with de la Chapelle’s). An

individual with Kleinfelter’s syndrome (XXY), for example, may experience atypical

development of the testes or primary hypogonadism, interrupting testicular steroidogenesis

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and thus resulting in atypically low testosterone production and associated fertility issues.

However, this disruption in steroidogenesis and hypergonadism is a sequela of the primary

or core pathology for the Aaronsons: the presence of an additional X chromosome.

The Aaronsons stress that implementation of their nosological system would not

require gonadal biopsy in “the large majority of cases” as gonadal status can often be

determined via deduction from biochemical and genetic studies (including, but not limited to

karyotype), and in those cases where gonadal status cannot be confidently deduced are

situations in which a gonadal biopsy would be indicated anyway (p. 446). They conclude with

what they identify as “perhaps the most compelling reason to base the classification of DSD

on gonadal histology” (p. 446)—the training of physicians—writing,

Understanding what has gone wrong in a patient with DSD starts with an

appreciation of the fundamental role the gonad plays in normal sexual differentiation

[emphasis added]. It is then a relatively small step to appreciate that an error

somewhere along this pathway may lead to undermasculinization, or that androgen

exposure of the female fetus can lead to virilization [emphasis added]. (p. 446).

As this final quote makes clear, for the Aaronsons, the central issue is clearly the role of the

endocrine system here in terms of “normal sexual differentiation” which is read as

cisgendered insofar as error is cashed out in terms of both physical (“inappropriate physical

changes at puberty”) and psychological (“confusion with gender identity”)

undermasculinization as a result of atypical hormone exposure. For Hughes, on the other

hand, DSD is a much broader category that captures more conditions because, unlike for the

Aaronsons, etiology is not what defines DSDs as a kind. In his rebuttal article, Hughes

(2010b) argues for retaining the DSD system of nomenclature as formulated in the

Consensus Statement and in doing so, forwards his own account of the pathology of intersex

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conditions, which I will refer to as the Atypical Sex/Non-Etiological Account. According to

Hughes, the primary pathology of DSDs is defined in terms of the atypical development of a

primary or secondary sex characteristic such that it is deemed to require medical

normalization, regardless of the mechanism (genetic or otherwise) by which it is brought

about.

In his response to the Aaronsons (titled “How should we classify intersex disorders?”),

Hughes defends the existing nomenclature while acknowledging the existence of debate over

whether it represents the best way to classify intersex conditions, even among the authors of

the Consensus Statement at the time of its writing. Hughes provides many arguments for the

DSD nomenclature’s retention, many of which are practical, pedagogical, or related to

knowledge production. For example, Hughes counters the Aaronsons’ claim that karyotype

is not a good starting point for a system of classification as it is “unreliable as a diagnosis,”

by arguing that karyotype is but a starting point that “merely steers the investigator towards

one of three subgroups”: 46 XY DSDs, 46 XX DSDs, and aneuploidy-related DSDs such as

47 XXY, 45X0/46XY etc. (Hughes, 2010b, p. 447). He continues by arguing that the

Aaronsons’ recommendation of using gonad histology as a starting point for classification is

both unnecessary and impractical. While he acknowledges the importance of gonadal

histology “in the context of DSD and their investigation,” he argues that “the reality is that

all newborns with atypical external genitalia will have a karyotype performed” (p. 448), that

gonadal histology will only ever be confirmed via biopsy in those cases where it cannot be

deduced from karyotype and biochemical studies (thus, where we would have done them

anyways), and further, that gonadal histology is often not particularly helpful:

One would hope that the dysgenetic DSD could be defined with equal clarity but

unless there is obvious evidence of a ‘streak’ gonad on histology, too often the

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clinician is provided with a report that documents changes in a testis akin to that

found in an undescended testis. That is hardly a diagnosis that sheds light on the

mechanism of a defect that could have arise along a pathway of sex determination

through to sex differentiation (pp. 447-448).

After noting that students who have taken part in a popular course titled “Mechanisms of

Disease” at the Part II Medical Sciences Tripos in Cambridge, “in which lectures on DSD

have figured in recent years” have found the course “universally satisfactory,” Hughes writes

that “the DSD nomenclature and the classification system which it spawned have been

cemented in major programmes of research underway in Europe (EuroDSD), in standard

textbooks of endocrinology and in recent monographs on DSD” (p. 448), citing two books

of which he is co-editor, and concluding that:

With such a head of steam having emerged as a consequence of the Chicago

Consensus and the remarkably rapid and widespread adoption of its principles into

clinical practice, the proposals proffered [by the Aaronsons] are not sufficiently

robust to make the case for changing what has now become the status quo [emphasis

in original] (2010b, p. 448).

Evidence of Hughes’ unique account of the pathology of intersex conditions—

the Atypical Sex/Non-Etiological Account—can be seen in the sole argument he gives

defending the expansion of DSD to include conditions previously excluded from

intersex, such as labial adhesions and undescended testes. Of these, he writes:

Many are not what previously would be considered as intersex, but DSD are not

defined in that vein. This is a distinction that the authors have failed to grasp when

arguing that the conditions such as simple hypospadias, cryptorchidism, cloacal

anomalies and labial adhesions are not examples of intersex. Of course they are not,

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but they are [emphasis in original] disorders of sex development; even the common

labial adhesion which can completely occlude the vaginal opening is not a ‘trivial’

matter for the mother who is concerned that her daughter does not have a normal

vagina (p. 447).

The emphasis here for Hughes is notably on both the presence of atypical sex characteristics

(i.e. genitalia) and on the social response that atypicality elicits (specifically, maternal

concern). Etiology is irrelevant for Hughes; what matters is that the individual has an

atypically sexed body and that it is experienced as such. Importantly, in the context of

intersex infants and children, this experience is not that of the child, but rather of their proxy

decision-makers, such as “the mother who is concerned that her daughter does not have a

normal vagina,” and physicians who deems their bodies worthy of normalization. Hughes’

DSD category is thus constituted at least in part through assumptions regarding self-

evidently normal and abnormal genitals, as well as the type of parental (and perhaps

physician) distress “abnormal” genitals are presumed to elicit, even in the absence of health

risks and questions regarding sex assignment or gender identity development.41

This exchange between Hughes and the Aaronsons is important, I argue, for multiple

reasons, not the least of which is its setting. The Journal of Pediatric Urology is the official

journal of the majority of pediatric urology associations internationally and of the 41 One might argue that Hughes does identify the abnormality of labial adhesions in this quote as vaginal occlusion. However, as Hughes himself states, labial adhesions can result in problematic vaginal occlusion, but they do not always. Furthermore, I would be surprised if Hughes (or any other clinician) would limit their recommendation regarding surgically “correcting” labial adhesions in infants and children unable to consent to only those occasions where vaginal occlusion does occur. Parental distress regarding one’s daughter’s normal vagina is the constant in this scenario, which marks labial adhesion as a non-trivial matter, not vaginal occlusion. Further, while questions existed in the past regarding optimal sex assignment in patients with 46 XY cloacal exstrophy variant, the traditional practice of assigning these patients female (in large part due to the ease of vaginoplasty compared to phalloplasty and their lack of available tissue) is now considered a mistake given that these patients generally exhibit normal hormone production and receptivity.

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International Society for Hypospadias and Disorders of Sex Development (ISHDSD) since

2013 (Frank, Mouriquand, Caldamone, & Malone, 2013).42 That the journal for those

specialists engaged primarily (and to a great extent, solely) in the surgical normalization of

the genitals of infants and children with DSDs has become the official journal of an

international professional society for clinicians engaged in DSD management is, I argue, a

sign that in this post-Consensus Statement era, the management of intersex conditions is still

considered to be both a pediatric specialty and one primarily organized around surgical

intervention.43

Beyond this, however, the first substantive conclusion I draw from this debate is that

in spite of all the historical discussion of whether or not intersex conditions and intersex

bodies were pathological, there remains no contemporary articulation of, nor consensus on,

the nature of their pathology. The mere existence of the debate itself attests to the lack of

consensus that exists among clinicians regarding intersex conditions (or DSDs) in this post-

Consensus Statement era and the pressing need for more analysis of the nature of the

pathology of DSDs and their treatment. Indeed, how else should we read a debate between

some of the most influential experts in the field of intersex management regarding the

traditionally uncontroversial status of conditions like Klinefelter’s and Turner’s as intersex?

In the previous chapter, I argued that feminist academics were unable to speak about the 42 As of June 21, 2014 the Journal of Pediatric Urology was the official journal of the Asia Pacific Association for Pediatric Urologists, the British Association of Paediatric Urologists, the European Society for Paediatric Urology, Nucleo de Urologia Pediátrica da Escola Paulista de Medicina, Section Française d’Urologie Pédiatrique, Sociedad Iberoamericana de Urología Pediátrica, and the Society for Fetal Urology (“Society Information,” http://www.jpurol.com/societyinfo). 43 The management of intersex conditions has long been considered a pediatric speciality such that adults are often unable to find non-pediatric care providers with adequate knowledge of these conditions (Feder, 2012, personal communication). Though some hoped the move to DSD would dispel the notion that intersex conditions are diagnosed and “fixed” in childhood, there is no evidence such a shift in thinking has occurred (Feder, 2014; Karzakis, 2008).

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science underwriting the DSD treatment model because their theoretical and rhetorical

strategy of embracing a biomedical model of intersex conditions and a nature/culture

distinction excluded them from that field of analysis. In short, by demanding we recognize

intersex conditions as disorders, they were left unable to question or theorize both the nature

of such disorder and the constitution of nature that rendered them pathological.

For their part, clinicians seem to take the pathological nature of intersex conditions

in general and ambiguous genitalia in the absence of health risks in particular as so self-

evident that justifying this pathological nature (or even acknowledging the existence of any

debate regarding it) is completely unnecessary. However, this means that not only can two of

the most widely recognized experts in intersex care disagree about the nature of the

pathology of intersex conditions, they can do so without even realizing this is what they are

disagreeing about. Indeed, though Hughes and the Aaronsons frame their exchange as one

primarily about best practices regarding classification, it is best understood as a debate about

the nature of the pathology of intersex conditions. They each put forth competing accounts

of the core or primary pathology of intersex conditions (and/or disorders of sex

development), and of what might be properly understood as sequelae or secondary

pathologies (in the way that nephropathy, neuropathy, and retinopathy leading to blindness

are common sequelae of the primary pathology diabetes). As a result of these essential and

conflicting assumptions, these eminent medical experts are left simply speaking past each

other and failing to engage the other’s arguments.

Second, I argue that even though the Aaronsons’ Etiological-Mechanistic Account and

Hughes’ Atypical Sex/Non-Etiological Account capture a different set of conditions, both

accounts aim at the production of cisgendered lives insofar as they both constitute the DSDs

as pathological via reference to cisgendered lives as normal. Both Hughes and the Aaronsons

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assume Money’s understanding of sex as variable and bipolar, of gender as binary and

oppositional (in terms of identity, physical presentation, and behaviour), and of the

unambiguous cis-alignment of sex and gender as normal. The reason why the Aaronsons and

Hughes capture different sets is because their respective accounts emphasize different

aspects or poles of this alignment between sex and gender—sex in the case of Hughes and

gender in the Aaronsons.

In its generality, Hughes’ account is more in line with the Consensus Statement’s

simple and vague definition of DSDs as “congenital conditions in which development of

chromosomal, gonadal, or anatomic sex is atypical” than that of the Aaronsons’. Through

his Atypical Sex/Non-Etiological Account, Hughes echoes Money’s later “genital

determinism” by emphasizing the importance of “normal” genitals for binary gender identity

development. For Hughes, one cannot be a “normal” girl (or develop as one) if they don’t

have a typically female sexed body. If the Aaronsons are right, however, that physicians

practically use DSD as a synonym for intersex, then it seems that their account is more

reflective of actual medical practice. Moreover, insofar as it limits itself to those conditions

traditionally identified as intersex, it more seems to more closely resemble the spirit or goal

of OGR than Hughes’ account. However, I argue that it is the Aaronsons’ emphasis on the

gender side of the constellation between sex and gender through their focus on hormones

that bring them more in line with the OGR treatment model and with Money’s thinking than

Hughes. The Aaronsons’ define the pathology of DSDs in terms of hormone disruption

(either in terms of production or sensitivity)—identifying this as the fundamental element in

“normal sexual differentiation” or the development of a cis-aligned sex and gender. This

echoes not only Money’s thinking on gender development, but also the dominant popular

and scientific account of gender development that has succeeded it: brain organization

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theory. In her 2010 book Brainstorm: The Flaws in the Science of Sex Differences, Rebecca Jordan-

Young writes that according to brain organization theory,

prenatal hormone exposures cause sexual differentiation of the brain—that is, early

hormones create permanent masculine or feminine patterns of desire, personality,

temperament, and cognition. Further, hormones latter in life could ‘activate’

behavioral predispositions, but the predispositions themselves result from the initial

‘organizing’ effects of hormones very early in development, before birth (p. xi).

While one might think that such a biologically determinist sounding account would be at

odds with Money’s thinking, given his frequent representation as a social constructionist

with regards to gender, Jordan-Young writes that this misrepresentation is ironic given that

“Money was actually the first [emphasis in original] to apply . . . brain organization theory to

data from humans and was easily the most prolific researcher in the field” (p. 30). Though

Money’s early work—particularly those articles from 1955 to 1957 in which he laid out the

OGR treatment model—emphasized the social aspects of gender development, Jordan-

Young points to Money’s eventual embrace of brain organization theory, citing a 1965 article

in which Money suggests that “women with CAH may have masculine sexuality because of

the brain-organizing effects of prenatal androgens” (p. 31). Not only did Money maintain the

position that “hormone effects were real, but subtle and limited” for the rest of his career,

but further, as Jordan-Young argues, “[h]is influence on brain organization theory research

in humans cannot be overestimated. Over the duration of his career, he was the author or

co-author of literally scores of reports suggesting that early hormone exposures created

masculine and feminine sexual predispositions in humans” (p. 30).

Money’s turn towards brain organization theory as a theory of normal and abnormal

gender development makes sense given his constitution of gender as not only prior to sex,

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but that which fixes sex. By constructing the pathology of DSDs in terms of hormones, the

Aaronsons are thus following Money in not only positioning gender as prior to sex, but into

brain organization theory, a field of research which Money helped define. Unsurprisingly,

research on intersex conditions is “a cornerstone of studies relatd to brain organization”;

indeed, disciplinary normalization is a system of not merely power, but knowledge (Jordan-

Young, 2010, p. 5). Jordan-Young stresses the central importance of intersexuality for those

studying brain organization theory in both humans and animals, “because genital

development is a marker of prenatal hormone exposure—the same exposures that may

affect the developing brain (albeit possibly during a different time frame)” (pp. 28-29). Thus,

ambiguous genitalia indicate atypical prenatal hormone exposure, providing researchers with

those “abnormal” cases from which we can glean knowledge and insight into the normal. As

Jordan-Young writes, “an enormous proportion of brain organization research has been

conducted on intersex subjects, because many scientists believe intersex people offer an

opportunity to study the effects of hormones that ‘disagree’ with gender socialization” (p.

17). Thus, intersex conditions are intimately entangled with the emergence of brain

organization theory not only as a field of knowledge, but as a discipline—that is, as a field of

knowledge/power. Intersex conditions have played (and continue to play) a central

organizing role in brain organization research, while the empirical claims generated within

this field are used to justify and direct the forms of normalization visited upon intersex

patients. In light of this intimate entanglement, I turn in the following section to briefly

review the history of research into brain organization theory.

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III. Intersex, Hormones, and Brain Organization Theory Rebecca Jordan-Young (2010) identifies the origins of brain organization theory with

a 1959 article by William Young and his colleagues at the University of Kansas tying the

effects of prenatal administration of hormones on the sexual differentiation of the genitals in

guinea pigs to their mating behavior (p. 21). She writes that this initial article “rests on a very

simple idea: the brain is a sort of accessory reproductive organ”:

Males and females don’t just need different genitals in order to have sex, or different

gonads that make the eggs and sperm necessary for conception. Males and females

also need different brains so they are predisposed to complementary sexual desires

and behaviors that lead to reproduction. This theory suggests that the same

mechanism is responsible for both kinds of development – that is, for sexual

differentiation of “both sets” of reproductive organs: the genitals and the brain (p.

21).

Since its first formulation in this 1959 article, brain organization theory “quickly moved past

its humble beginning…to become the ‘grand theory’ for sexual differentiation of behavior in

mammals, and then even more generally extending to vertebrates,” such that by the 1970s,

any investigations into masculinity and femininity that didn’t invoke it were considered

marginal or illegitimate (pp. 21, 36). Importantly, Jordan-Young notes that the sexually

differentiating effect attributed to hormones are not restricted to “those behaviors that are

directly involved in reproduction or courting. Instead, brain organization theory is used to

explain a very wide range of differences related to gender and sexuality –in humans these

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include everything from spatial relations, verbal ability, or math aptitude, to a tendency to

display nurturing behaviors, to sexual orientation” (pp. 21-22).

This was not the first experiment or theory regarding hormone effects on behavior;

however, earlier work focused on behavior in terms of sexuality rather than gender, in

accordance with Foucault’s account of the deployment of sexuality through a scientia sexualis

preceding Money’s introduction of gender into this field of medical knowledge/power

between 1955 and 1957. The study of hormones, and thus, the establishment of

endocrinology as a discipline, emerged at the beginning of the twentieth century, and, as

Jordan-Young writes, “from the beginning, endocrinologists cast an eye toward understand

how sex differences develop in both bodies and psychology” (p. 22). Early endocrinologists

thought of hormones as “the chemical messengers of masculinity and femininity,” which

were posited as “responsible for the development of sex differences throughout the body, as

well as for the distinctions in how the sexes think, feel and act” (Oudshoorn, 1994, p. 17;

Jordan-Young, 2010, p. 22). Nelly Oudshoorn (1994) identifies three key assumptions about

hormones that underwrote early hormone research. First, hormones were sex-specific “in

origin and in function” such that they not only “appear[ed] and relat[ed] to proper

functioning in only one sex,” but were understood to generally “cause malfunction in the

other” (Oudshoorn, 1994, p. 22; Jordan-Young, 2010, p. 23). Second, hormone function was

posited as limited to “or at least most important for, functions that were directly related to

sex and reproduction” (Jordan-Young, 2010, p. 23; see Oushoorn, 1994, pp. 22-24). Finally,

hormones were considered to be “antagonistic,” in the sense that “the hormones of one sex

would counteract the hormones of the others” (Jordan-Young, 2010, p. 23). Jordan-Young

writes that “each of these assumptions was assaulted by data as early as 1921,” yet they

nonetheless persisted (likely due to the sexist oppression they could be used to justify),

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eventually giving rise to studies of the effects of hormones on sexual behavior in humans

and then, with Money, in terms of gender. Though brain organization theory is now a theory

about both gender and sexuality, as Jordan-Young writes, the story of hormones

masculinizing or feminizing brains is “[s]till, at its heart...a story about the development of

sexuality” (p. 22).

Early research studying the effects of hormone exposure on human behavior

focused on homosexuality, and was based on the then-dominant theory of homosexuality as

“inversion,” “meaning that the mind or soul of homosexual men was feminine and that of

lesbians was masculine” (p. 25). The first studies of this kind, by Viennese psychologist

Eugen Steinach beginning in approximately 1912, were ultimately failures: the seven

homosexual men who had one of their testicles replaced with one from a heterosexual man

failed to become heterosexual in response to treatment (Jordan-Young, 2010, p. 25; Fausto-

Sterling, 2000, p. 158). However, Jordan-Young notes that despite accumulating evidence

undermining the idea that gay men had a more “feminine” hormone profile (and lesbians a

more masculine one), the idea “continued to be quite popular with scientists” (p. 25).

Indeed, by the end of the 1950s, “much of the data regarding hormone effects on behavior

[original emphasis] seemed disjointed and even contradictory” (p. 25). In response to the

conflicting research, Young and his colleagues determined that “the key to predicting the

effects of certain hormones was understanding the timing of exposures” (p. 27). They argued

that gonadal hormones acted on both the brain and the genitals in the same way,

“influenc[ing] the direction of differentation” towards either male or female during the

prenatal period and “stimulat[ing] function” postnatally (Young, Goy, and Phoenix, 1965, p.

184). Jordan-Young writes that “this new framework significantly shifted the direction of

future experiments,” positing that hormones permanently organized brains (and genitals) in

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the prenatal period, making this an irreversible step. Subsequently adult hormone exposure

could not be expected to bring about “sex reversals” in terms of sexual behavior –

explaining away all prior contradictory results – though it might, as a stimulant, affect that

behavior in terms of timing and frequency (p. 27).

Brain organization theory as formulated by Young and his colleagues on the basis of

their guinea pig studies in 1959 had clear relevancy for humans; however, as Jordan-Young

writes, there were two substantial obstacles to proving it. The first was the lack of

experimental data in humans and the fact that there was “no possibility of generating such

data,” given that such experiments “would involve risky and unethical manipulation of

human fetuses” (p. 28). The second problem was Money and his research on those with

intersex conditions which indicated that rearing was the “the only variable that reliably

predicted whether the intersex person would feel male or female,” and thus seemed to

contradict their theory. Jordan-Young writes that Money’s team and Young’s team “were

already corresponding before the definitive [1959] paper on brain organization theory came

out, and the mutual implications of the two research programs were already clear,” insofar as

Money’s research could indicate that brain organization theory was limited in its applicability

to nonhuman animals (p. 28). Money was, however, eventually won over, such that by “a

decade later, [he] had subtly modified his position, walking a fine line between his earlier

strong claims for the primacy of sex assignment and the possibility of a psychological

predisposition stemming from prenatal hormone exposures” (p. 29).

The central role Money played in the establishment of brain organization theory as a

field is evident in the simple fact that “for the first six years of brain organization research in

humans, all of the published work was conducted by…Money and various junior colleagues”

at Johns Hopkins (Jordan-Young, 2010, p. 33). In these early studies, Money and his

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colleagues reported that “girls and women exposed to high levels of androgen exhibited

sexual traits and behavior that was more masculine than was expected. Conversely, they

found that unusually low exposure to androgen among boys and men resulted in behavior

that was more feminine than expected” (p. 33). In line with Money’s re-articulation of the

field of medical power/knowledge initially constituted through the deployment of sexuality

via the introduction of gender, he and his fellow researchers expanded or rearticulated the

way in which they studied the behavioral effects of hormones in their patients, moving

beyond sexuality to include other sex-typed behaviors such as “subjects’ interest in careers

versus interest in ‘marriage and motherhood,’ preferred patterns of games and playmates in

the children, manner of dress, extent of expressed satisfaction in their sex, specific cognitive

skills like verbal or math ability and spatial relations, and occupational patterns among

adults” (p. 33). Jordan-Young points out that the specific ways in which the intersexed

difference from controls or expectations “varied from study to study…and often the

differences that showed up in one report didn’t show up in another” (p. 33). Nonetheless,

she writes, “each report suggested enough differences between hormone-exposed and

unexposed groups that the idea of brain organization in humans began to look very

convincing” (p. 33).

Money and his colleagues described their intersex patients as “analogues” simulating

hormone exposure experiments on brain organization in animals (p. 33). However, Jordan-

Young points out that not only were they “studying the same syndromes from which Money

and the Hampsons had earlier concluded that ‘psychosexuality’ (that is, gender and sexuality)

is entirely based on socialization,” but were often studying “the same actual patients” and

reaching a far more biologically determinist conclusion about the organizing effects of

hormones (p. 33). Jordan-Young argues that two things had changed: first, “brain

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organization theory introduced a theoretical mechanism whereby hormones might influence

the brain directly in a process distinct from genital differentiation” (p. 33). And second, by

the late 1960s, those with intersex conditions were being diagnosed and treated much earlier

in life than they had before, such that “most of these patients were presumed to have

relatively sex-typical exposures after birth” (p. 34). This made it possible to separate out

atypical fetal and post-natal hormones in humans in a way that had previously only been

possible experimentally in animals. This introduced a symmetry between the human and the

animal studies in terms of the ability to differentiate the “organizing” and the “activating”

effects of hormones, and by the 70s, Money and his colleagues had grown much less

tentative regarding brain organization theory and were beginning to “assert that there was a

growing evidence of a real, though limited, organizing effect from prenatal hormone

exposure” (p. 34).

Nonetheless, Jordan-Young notes that Money and his colleagues were still

“convinced that the ‘big picture’ of development in what they called ‘gender dimorphic

behavior’ was best seen by focusing not on prenatal hormones but on postnatal rearing

experiences” (p. 34). Researchers working on brain organization theory disagree about the

relative importance of the social vs. the natural in terms of hormone exposure (p. 8). Money

and his colleagues, however, represent those brain organization researchers who most

emphasized the social, with Jordan-Young writing that in the research that’s followed

Money, his “preference for seeing postnatal social experiences as the major player gender

and sexuality gave way” to ones which emphasize the biological (p. 36). Normative

statements about the role of men and women or “appropriate” masculinity and femininity

“were replaced with more neutral statements about what women and girls versus boys and

men do and think and say they want” (p. 36). This descriptive approach, argues Jordan-

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Young, “significantly deemphasized the role of norms, social structures and modeling in

developing gendered traits. Instead, disembodied as ‘naked facts’ or sexual differences, they

began to look more and more like simple reflections of male and female nature” (p. 36).

“Among scientists conducting brain organization research, Money, Ehrhardt, and their

respective collaborators have indeed devoted more ink than others to emphasizing the social

aspects of development” (p. 7)

Brain organization theory is thus an extension or elaboration of scientia sexualis as

Foucault describes it, with contemporary researchers (and popular culture) emphasizing the

role of the biological or natural over that of the social in the development of gender and

sexuality. Further, though most brain organization researchers think of themselves as

“interactionists,” Jordan-Young argues brain organization theory is a “biosocial” rather than

“interactionist model” “because it does not attempt to account for how physical and social

variables work in tandem [original emphasis]” (p. 8). That is, is presumes an additive, linear

model of social and natural (hormonal) inputs leading to later behavioral outputs, without

considering the way in which these inputs might interact or how that interaction might affect

development. A properly interactionist model, she writes, would “suggest that the character

[original emphasis] (not just the amount) of biological influence is affected by specific

aspects of the environment, and vice versa” (p. 8). Research studies on brain organization

theory – which are performed primarily on intersex and trans* individuals – are underwritten

by a two part hypothesis, which defines the theory in its contemporary form. Part one is the

assumption that “that male-typical sexual orientation or gender identity will correlate with

other male-typical physical or psychological traits (and vice versa for female-typical sexual

orientation and gender identity),” while part two is the assumption that those traits correlate

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because “both are influenced by hormones during the critical period of development” (p.

38).

If I am correct that the Aaronsons’ Etiological-Mechanistic Account of the

pathology of intersex conditions is appealing to brain organization theory by constructing

pathology in terms of atypical hormone production or sensitivity, then their account is more

properly considered the heir to Money’s than that of Hughes. In doing so, the Aaronsons

cohere to the specific constellation of the heterosexual matrix as Money created it,

prioritizing gender as that both constitutes and fixes sex. Though the Aaronsons’ agree with

Hughes that those atypical genitals in the form of labial adhesions or hypospadias resulting

from “complex but local developmental errors” should have their genitals surgically

normalized, it is the “endocrine disorder typical of the intersex patient” – that is, a disorder

in the pathway of hormone production – that defines those with DSDs. In this way, both

nosological systems aim at the production of cisgendered lives, insofar as they define

pathology by situating cisgendered life as normal; the Aaronsons simply emphasize gender

while Hughes emphasizes typically sexed genitals.

While it might be true that DSD aims at the production of gendered lives at the level

of nosology, it does not mean that this is necessarily true at the level of practices.

Categorization (particularly in terms of pathology) and practices are intimately linked for

Foucault; objectifying discourse and non-discursive institutional practices are together what

produce the intersex body as an effect and object of medical knowledge/power. However,

there can be fissures or misalignment between our systems of categorization and the

practices they both justify and enable. Thus, in the next section, I turn to examine the clinical

recommendations outlined in the Consensus Statement in order to cash out how the DSD

treatment model practically constitutes the core pathology of DSD. I focus in particular on

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the ways in which practices have changed from intersex to DSD. Given that the overall

frequency with which genital normalizing surgeries are performed hasn’t changed under

DSD, changes to the specific ways in which these surgeries are performed will be far more

illustrative in terms of establishing any changes that may have occurred from intersex to

DSD in terms of both the treatment model’s goals or aims and the account of sex and

gender it posits. 44

IV. OGR vs DSD: The Clinical Recommendations Contemporary medical management of intersex conditions under DSD deviates from

their management under OGR as it was first laid out by Money in three ways: 1) with regards

to gender assignment recommendations for those with micropenis, for 46 XY patients with

cloacal exstrophy and for severely masculinized 46 XX infants with CAH; 2) with regards to

the prenatal treatment of intersex infants with dexamethasone (often called “fetal dex”) and;

3) with regards to the treatment of intersex teens with puberty blockers such as the

gonadotropin releasing hormone (GnRH) analogue leuprolide (known commercially as

Lupron). Through an examination of these three shifts in intersex management between

OGR and DSD, I will conclude that at the level of clinical practice, the DSD treatment

model still aims at the production of cisgendered lives, with gender defined within a frame

established by brain organization theory. Further, I conclude that the use of puberty blockers

in intersex adolescents aims at simulating the appearance of a cisgendered life where one cannot

44 The table titled “Common Intersex Conditions and their Etiology, Frequency, Symptomology, Psychosexual Outcome Data and Differential Treatment Under OGR and DSD” available in Appendix A, however, outlines detailed information regarding the most common intersex conditions, from their underlying etiology and frequencies, to information on psychosexual differentiation where available and the clinical recommendations for treating them under both the OGR and DSD treatment model.

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actually be secured or produced. In these contexts, medical efforts aim at the production of a

life that passes as such, by preventing or eliminating visibly trans* futures.

A. Shifting Ideas on Sex Assignment

Whereas the OGR treatment model recommended female sex assignment for both

46XY patients with micropenis or cloacal exstrophy (both the result of “local developmental

errors” rather than a disruption in steroidogenesis), and severely masculinized 46 XX infants

with CAH, consensus has shifted in the post-Intersex/DSD era to assigning these patients

male, primarily as a result of the popular and scientific dominance of brain organization

theory. The rationale for assigning the 46 XY patients female under OGR had to do with the

limitations of phalloplasty techniques—it is often simply too difficult to build a penis

capable of, as Creighton et al. say (2012), “voiding in a standing position and achieving

straight erections and proper ejaculation that will permit suitable sexual intercourse” (p. 607).

Furthermore, the XX chromosomes of 46 XX CAH patients, coupled with the relative ease

of vaginoplasty, meant that clinicians saw themselves as restoring these latter patients’ bodies

rather than changing them in some way; surgery and hormone therapy for these patients

restored them to being the girls that they both should have been, and really were, all along.

However, the Consensus Statement recommends male assignment for infants with

micropenis (or a penis that is smaller than 2.5 standard deviations below the mean), “taking

into account equal satisfaction with assigned gender in those raised male or female but no

need for surgery and the potential for fertility in patients reared male” (Lee et al., 2006, p.

491; Hatipoglu, N. & Kurtoglu, 2013, p. 217).

Although avoiding surgery and preserving fertility seem in themselves to be excellent

reasons for assigning infants with micropenis a male sex (especially if the limited outcome

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data available on satisfaction with assigned sex is ambivalent), Karkazis (2008) locates the

motivation behind this change in recommendation to brain organization theory:

It would be an oversimplification to assume that clinicians’ more expansive

understandings of masculine sexuality alone are responsible for the recent

reevaluation of female gender assignment for infants with a micropenis. More

important is the recent scientific and popular resurgence of biologically based

theories of gender difference that, generally speaking, emphasize the importance of

chromosomes, genes, and hormones in making us men and women (p. 105).

I concur with Karkazis’s assessment, and argue that the real appeal here is to a

notion of binary, oppositional gender grounded in brain organization theory, and to the

production of a cisgendered future. Those with micropenis have enough of the markers of

male sex—such as XY chromosomes, but most important, typical testosterone production—

such that their body is taken to act as an adequate indicator of future gender and sexuality

(despite equivocating superificial evidence). Further evidence that brain organization theory

is at work in clinicians’ rationales regarding sex assignment can be seen in shifting positions

on 46 XY cloacal exstrophy patients. The Consensus Statement itself equivocates on the

issue of treating these patients, simply noting that those “reared female show variability in

gender identity outcome, but >65% seem to live as female” (Lee et al., 2006, e491).

However, Arboleda, Sandberg, and Vilain (2014) point to a 2004 report of “self-initiated

gender-change in a cohort of patients with 46 XY cloacal exstrophy” as initiating a shift in

pediatric urologists’ recommendations regarding sex assignment. They cite a survey of

American pediatric urologists published in 2011 in which 79% of respondents recommended

male assignments for 46 XY cloacal exstrophy, “with 97% identifying ‘brain imprinting’ by

prenatal androgens as an important factor in their decision” (p. 611). Furthermore, though

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the Consensus Statement itself reproduces the OGR treatment model’s recommendation

that “markedly masculinized 46 XX CAH infants be assigned female” there is a good deal of

evidence to suggest that clinical practice is moving away from this position. In a 2010 Journal

of Endocrinology and Metabolism article titled “Approach to Assigning Gender in 46 XX

Congenital Adrenal Hyperplasia with Male External Genitalia: Replacing Dogmatism with

Pragmatism,” Consensus Statement co-authors Christopher Houk and Peter Lee argue

specifically for male assignment for these patients. In it, Houk and Lee specifically identify

“the primary goal” in treating those with DSDs as “gender identity [being] consistent with gender

assignment” [emphasis added] (p. 4508) and argue that given this, clinicians should seriously

consider male assignment for the 46 XX patient with male external genitalia despite the

Consensus Statement’s contrary recommendations (which they identify as “implicitly

tentative because of the low level of scientific support that underpins them, most being in

the weakest category” [p. 4508]). Though they acknowledge that outcome evidence for their

proposal “is incomplete,” they argue there are nonetheless “several lines of evidence which

support it” (p. 4503). In addition to citing studies showing that there appears “to be a high

risk of gender dysphoria” in markedly masculinized patients assigned female, “regardless of

karyotype” they also note “additional, albeit indirect support” from a study revealing gender

transition (if not dysphoria) to be relatively rare among the few (33) markedly masculinized

XX individuals assigned male that have been studied (pp. 4503-4504). Finally, they identify

the avoidance of genital surgery and “the irrevocable loss of sensitive genital tissue” as an

additional benefit of male assignment in these cases, pointing out that it will “offer more

options for the adult DSD patient who would logically have a better outcome with surgical

reassignment from male to female than vice versa” (p. 4504).

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Houk and Lee invoke brain organization theory both implicitly and explicitly in their

arguments for assigning severely masculinized 46 XX patients male, despite acknowledging

that “the understanding of the effect of in utero androgens on human central nervous system

(CNS) development remains inadequate to provide clear guidelines for gender assignment”

(p. 4506). Their reference to a high risk of gender dysphoria for markedly masculinized

patients assigned female “regardless of karyotype,” for example, is a thinly veiled appeal to

brain organization theory and its assumption that the developmental effects of hormones on

the genitals is mirrored in the brain. Thus masculinized (or “virilized”) the genitalia, the

more masculinized the brain. More explicitly however, Houk and Lee identify “androgen-

induced masculinization of the fetal brain” as appearing to be “important in the DSD patient

exposed to male typical levels of testosterone during fetal life, including masculinized 46, XX

DSD patients in whom such exposure produced male genitalia” (p. 4506). Furthermore, they

cite “high levels of fetal androgen exposure” as a key justification for the move to male

assignment for 46 XY cloacal exstrophy patients within the Consensus Statement, and argue

that “similar consideration be given to the 46, XX CAH child with functional male genitalia

whose existence implies a high degree of masculinization of the brain” (p. 4506). Thus, in all

three of these cases—micropenis, 46 XY cloacal exstrophy patients, and 46 XX CAH

patients—changes in treatment are not motivated exclusively or even primarily by a desire to

avoid surgery and its attendant complications or to preserve fertility, but to produce stably

cisgendered subjects, and secure a future free of gender ambiguity, dysphoria, and/or

transition.

The final two ways in which contemporary intersex management differs from

management under the OGR model as laid out by Money are the prophylactic prenatal

treatment of 46 XX intersex infants with dex and the treatment of intersex adolescents with

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puberty-blockers like Lupron. Interestingly, neither practice is officially endorsed, nor

explicitly mentioned by the Consensus Statement, likely because both treatments are off-

label, having never been approved by the FDA for use in this context (though the prenatal

use of dex is discussed in articles cited by the Consensus Statement, most notably Warne,

Grocer, and Zajac’s (2005) “Hormonal Therapies for Individuals with Intersex Conditions:

Protocol for Use” which positions it as the prenatal phase of the intersex patient’s life-long

hormone management). Nonetheless, evidence of the use of both treatments to manage

those with intersex conditions can be found within the literature.

B. Fetal Dex

The more well known and controversial of these two practices is the treatment of

women identified as at risk of having a child with CAH (either through genetic screening or

having already had a child with classic CAH) prenatally with dex in order to prevent the

masculinization of 46 XX CAH fetuses. Prenatal administration of dex for this specific

reason was first introduced in France in 1978 and in the USA in 1986 by endocrinologist

Maria New (Meyer-Bahlburg et al., 2012, 103). Dreger, Feder, and Advocates for Informed

Choice director Anne Tamar-Mattis write in their 2012 article “Prenatal Dexamethasone for

Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine,” that it is

now seen by many specialists in the area as constituting the standard of care when treating

women who might give birth to a child with CAH (p. 278). A glucocorticoid steroid 25 times

more potent than cortisol, fetal dex will not cure CAH. Rather, the goal is specifically to

prevent overproduction of androgens in only those CAH-affected fetuses with XX

chromosomes, and thus, the masculinization of both their genitals and their brains. While

the atypically low cortisol production associated with CAH results in the production of

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atypically high levels of androgens in all affected fetuses, it is not considered a problem for

those with XY chromosomes as such exposure does not carry the risk of genital or gender

ambiguity as it does for those with XY chromosomes. However, because the masculinization

process this treatment seeks to avoid occurs prior to clinicians’ ability to test whether the

fetus is affected—that is, before we can test whether the fetus has both XX chromosomes

and CAH—fetal dex must be administered to a pregnant woman as soon as she learns she is

pregnant (ideally 5-6 weeks gestation) (Warne, Grover, & Zajac, 2005, p. 23). Therapy is thus

discontinued if the fetus is found to have XY chromosomes or if it is found to have XX

chromosomes but tests negative for CAH, which accounts for 7/8 of all cases.45

Administration of fetal dex to prevent masculinization of 46XX CAH infants has been

lauded as “an excellent example of pharmacological therapy during pregnancy” and a

“paradigm of prenatal diagnosis and treatment” (Rosner et al., 2006, p. 803; Nimkarn &

New, 2010, p. 5).

Despite this, multiple concerns have been raised regarding the ethicality of fetal dex in

recent years. Because the administration of fetal dex to avoid masculinization in 46 XX

fetuses with CAH is an off-label use of the steroid, it has never been clinically trialed and

thus, despite being lauded as paradigmatic and promoted as safe (particularly to those

pregnant woman who receive it), we have no real idea of the effects of the prenatal

administration of dexamethasone—which exposes the developing fetuses to 60-100 times

the normal level of glucocorticoids—on either the fetus or the mother (p. 281). Fetal dex can

nonetheless be administered for this use due to its categorization as a category C drug,

meaning: “Animal reproduction studies have shown an adverse effect on the fetus and there

45 An autosomal recessive condition, only ¼ of fetuses will be positive for CAH and only ½ of those will be XX fetuses, leaving the total likelihood of having an XX, CAH positive fetus at 1/8.

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are no adequate and well-controlled studies in humans, but potential benefits may warrant

use of the drug in pregnant women despite potential risks”(FDA Pregnancy Categories,

2011). Animal studies as well as retroactive studies of human children treated with fetal dex

prenatally for this purpose, however, have raised many concerns over the use of fetal dex.

For example, in the past five years, studies have reported correlations between prenatal

exposure to fetal dex and increased risk for heart disease and diabetes (Kelly et al., 2012), as

well as cognitive delays in both animals and humans (Hirvikoski et al., 2012; Meyer-Bahlburg

et al., 2012; Dreger, Feder, & Tamar-Mattis, 2012, p. 281). In fact, so many problems have

been identified with fetal dex that American endocrinologists Walter L. Miller and Selma

Feldman Witchel published a “clinical opinion” piece in the May 2013 issue of the American

Journal of Obstetrics & Gynecology urging obstetricians to abstain from treating their pregnant

patients at risk of having a child with CAH with fetal dex, and prevent their being treated

with it by endocrinologists. They argue that the risks of this intervention outweigh the

benefits of “ameliorating genital virilization” for about 80-85% of affected fetuses—by citing

evidence from both human and animal studies showing that “first-trimester dexamethasone

decreases birthweight; affects renal, pancreatic beta cell, and brain development; increases

anxiety; and predisposes to adult hypertension and hyperglycemia,” in addition to retroactive

human studies showing that “first-trimester dexamethasone is associated with oro-facial

clefts, decreased birthweight, poorer verbal working memory, and poorer self- perception of

scholastic and social competence” (Miller & Witchel, 2013, p. 355). Furthermore, Swedish

researchers performing the only controlled and prospective study of fetal dex to have ever

occurred announced in 2012 that they stopped recruiting new patients into the study

beginning in 2010 after “severe adverse events” were noted in the treatment group on

follow-up such as developmental delay, hydrocephalus, and severe mood fluctuations

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(Hirvikoski et al., 2012, p. 1882). In their article in the The Journal of Clinical Endocrinology &

Metabolism, the Swedish team conclude that the use of fetal dex is unethical not only in daily

medical practice, but even in the context of clinical trials, given our inadequate

understanding of its risks and that 7/8s of those fetuses exposed “do not benefit from the

treatment per se” (p. 1882). They write:

We find it unacceptable that, globally, fetuses at risk for CAH are still treated

prenatally with DEX without follow-up. If further treatment is initiated in other

centers, we wish to stress that the minimal requirement should be to . . . perform

prenatal DEX treatment of children at risk for CAH only within clinical trials

including long-term follow-up of all treated individuals, as well as to give thorough

information to the parents about the potential risks and uncertainties, in addition to

the benefits of this treatment (Hirvikoski et al., 2012, p. 1882).

One of the acknowledged goals of prophylactic, prenatal administration of fetal dex

is preventing the development of (and avoiding the surgery to treat) a urogenital sinus in

CAH-affected XX fetuses, wherein the urethra and vagina are joined, increasing the risk of

repeat infections. However, Dreger, Feder, and Tamar-Mattis (2012) argue that this is but a

secondary goal, pointing to articles by New—one of the primary proponents of fetal dex—

to argue that the primary aim of the treatment is to ensure that “CAH-affected female

fetuses . . . develop in a more female-typical fashion than they otherwise might,” so as to

avoid both ambiguous genitalia (and thusly secure a typically female sexed body) and so-

called “behavioral masculinization” in the form of tomboyishness and lesbianism or

bisexuality (p. 280). Dreger, Feder, and Tamar-Mattis identify brain organization theory as

playing a key role in the rationale behind the use of fetal dex, writing:

Androgens contribute to sex differentiation, including in the brain and genitals;

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relatively low prenatal levels ordinarily result in a more female-typical development;

relatively high levels usually result in male-typical development. In certain forms of

CAH—including 21-hydroxylase deficiency (21-OHD CAH), i.e., the type of CAH

most at issue here—the prenatal production of high levels of androgens may result in

a genetic female (46, XX) fetus developing along a more masculine pathway

neurologically and genitally. Prenatal dexamethasone is meant to engineer the CAH-

affected female fetus’s hormonal system to be typically female (pp. 280-281).

The authors underscore the central importance of securing what I call a Cisgendered future

in clinicians’ rationales, quoting a 2010 article co-authored by Nimkarn and New stating that,

Without prenatal therapy, masculinization of external genitalia in females is

potentially devastating. It carries the risk of wrong sex assignment at birth, difficult

reconstructive surgery, and subsequent long-term effects on quality of life. Gender-

related behaviors, namely childhood play, peer association, career and leisure time

preferences in adolescence and adulthood, maternalism [interest in being a mother],

aggression, and sexual orientation become masculinized in 46, XX girls and women

with 21HOD deficiency. . . . Genital sensitivity impairment and difficulties in sexual

function in women who underwent genitoplasty early in life have likewise been

reported. We anticipate that prenatal dexamethasone therapy will reduce the well-

documented behavioral masculinization and difficulties related to reconstructive

surgeries (Nimkarn & New, 2010, p. 9).

Dreger, Feder, and Tamar-Mattis note both that Nimkarn and New seem particularly

concerned with XX CAH women failing to be heterosexual wives and mothers, having

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raised the issue in multiple publications and at multiple events,46 and the irony of Nimkarn

and New’s positioning of one elective, experimental prenatal intervention (fetal dex) as

necessary in order to avoid another elective, experimental intervention (feminizing

genitoplasty). Importantly, the goal and ultimate achievement of each of these elective,

experimental interventions is a future that is cisgendered. Whether we use fetal dex or, we

use feminizing genital surgery and hormones—either way, we’re trying to produce girls who

are girls, in both body (sex) and mind (gender).

C. Puberty Suppression

The final clinical practice to be introduced into the toolbox of intersex management

strategies in the past few years is the treatment of intersex adolescents with puberty-blockers

such as Lupron. Another off-label use, there isn’t as much evidence in the clinical literature

for the use of puberty-blockers in intersex adolescents as there is for the use of fetal dex in

sex assignment. I have, however, found some very interesting bits of evidence for the use of

Lupron in intersex adolescents in two sources—the ISNA’s 2006 publications: the Handbook

for Parents and Clinical Guidelines for the Management of Disorders of Sex Development in Childhood.

The practice is mentioned twice in the Handbook for Parents (2006b), first in the section titled

“Puberty,” where the authors suggest that parents talk to a pediatric endocrinologist “in the

event puberty is beginning before your child is sure of what she or he wants, [as] special

46 For example, Dreger, Feder, and Tamar-Mattis report that at a 2001 meeting of parents of CAH affected children organized by the CARES Foundation, New showed a photo of an XX infant with CAH and ambiguous genitalia and stated “The challenge here is . . . to see what could be done to restore this baby to the normal female apperance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl” (New quoted in Dreger, Feder, & Tamar-Mattis, 2012, p. 282).

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hormone treatments may be used to hold off puberty a little longer” (p. 31). The second

mention comes in an answer in the section titled “Questions About Medical Care and

Surgeries,” detailing the pros and cons of gonadectomy. In it, the authors write:

If a child is entering puberty and has a kind of gonad that is making her or his

puberty go the “wrong way,” you should give the child the option of having the

gonads out. (For example, a girl with 5-AR Deficiency and testes might start turning

more masculine when she starts puberty, something she may not want. Her parents

should talk with her and her doctor about her options, including medicines to delay

puberty [emphasis added] if she’s unsure of her gender identity, or surgery to remove

her testes.) (p. 62)

The references to the use of Lupron in the Clinical Guidelines (2006a) are very similar

to those in the Handbook for Parents. The first mention also deals with the issue of puberty

going “the wrong way,” this time in the context of those 46 XY PAIS patients assigned

female whose gonads were not removed in childhood, whom the authors caution will

experience “some pubertal virilization” as a result of their testes (p. 5). The authors suggest

that in these cases “leuprolide (marketed as Lupron) may be used to delay puberty so that

patient’s decision-making about orchidectomy [testicle removal] is not rushed” (pp. 5-6).

Further in a section titled “Gender Assignment,” the authors again suggest the use of

Lupron; however, this time the practice is importantly positioned as a way of dealing

specifically with gender ambiguity rather than the development of the “wrong” secondary sex

characteristics or facilitating patient decision-making:

On rare occasions, a child with a DSD may approach puberty without having clearly

expressed a gender identity. Consider, for example, a child with histologically normal

testes, 46,XY, and partial virilization who is being raised as a girl but who is

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approaching puberty without a clearly expressed gender identity. In such cases,

leuprolide (marketed as Lupron) may be used to delay puberty while psychologists

and psychiatrists help the child explore feelings and options (2006a, pp. 25-26).

Because of these four very specific references to the practice of treating intersex

adolescents with puberty-blockers in these two documents, I argue that those who specialize

in intersex care are likely fairly familiar with it, even if it is not explicitly endorsed in the

Consensus Statement and rarely if ever mentioned in the clinical literature in the context of

intersex care. Many clinicians working in intersex management are listed as contributers in

both of these documents, with the Clinical Guidelines in particular listing Creighton in addition

to physicians Joel Frader, Philip Gruppuso, William Reiner, Justine Schober, and Aron

Sousa, among others (pp. iii-v).

The use of puberty-blockers in adolescents has received quite a bit of attention

recently, specifically in the context of medically managing trans* adolescents. The latest

version of the international standard of care for the medical management of trans*

individuals, the World Professional Association for Transgender Health (WPATH) Standards

of Care for the Health of Transsexual, Transgender and Gender-Nonconforming People, is the first to

include puberty-blockers as part of the standard suite of therapies available for the treatment

of trans* adolescents (though they acknowledge that not all clinics offer this treatment and

that its high cost “is prohibitive for some patients”) (WPATH, 2012, pp. 18-20). In the

seventh version of the WPATH’s Standards of Care published in 2012, one of the listed roles

for “mental health professionals working with children and adolescents with gender

dysphoria” is “refer[ring] adolescents for additional physical interventions (such as puberty-

suppressing hormones) to alleviate gender dysphoria” (p. 14). Further, the use of puberty-

blockers is the first type of physical intervention for adolescents listed within that section, as

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well as the sole fully reversible intervention, as opposed to partially reversible interventions

(such as hormone therapy to masculinize or feminize the body) and irreversible interventions

(such as surgical procedures).47 WPATH recommends a “staged process” in order to “keep

options open through the first two stages,” stating that movement “from one stage to

another should not occur until there has been adequate time for adolescents and their

parents to assimilate fully the effects of earlier interventions” (p. 18). Thus, under the latest

version of the WPATH’s standards of care, puberty suppression using GnRH analogues has

become the official first step in treating trans* adolescents.

WPATH identifies two goals as justifying the use of puberty-blockers, which

adolescents may be eligible to receive as soon as puberty begins (pp. 18-19). The first of

these is that it “gives adolescents more time to explore their gender nonconformity and

other developmental issues,” and the second is that “their use may facilitate transition by

preventing the development of sex characteristics that are difficult or impossible to reverse if

adolescents continue on to pursue sex reassignment” (p. 19). The Standards of Care further

emphasizes the importance of puberty-blockers in their statement on the risks of

withholding medical treatment from adolescents, in which they caution:

Refusing timely medical interventions for adolescents might prolong gender

dysphoria and contribute to an appearance that could provoke abuse and

stigmatization. As the level of gender-related abuse is strongly associated with the

degree of psychiatric distress during adolescence, withholding puberty suppression

and subsequent feminizing or masculinizing hormone therapy is not a neutral option

for adolescents (p. 21).

47 If puberty blockers are followed by hormone therapy, the ability to reproduce is eliminated (Sadjadi, 2013, p. 2).

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However, it nonetheless acknowledges concerns that have been raised regarding the paucity

of evidence to support this off-label use of GnRH analogues, the possible negative side

effects this treatment may have on both bone development and height, as well as possible

complications its use might have for patients with penises who later seek feminizing genital

surgeries:

Adolescents with male genitalia who start GnRH analogues early in puberty should

be informed that this could result in insufficient penile tissue for penile inversion

vaginoplasty techniques (alternative techniques, such as the use of a skin graft or

colon tissue, are available) (p. 19).

Subsequently, WPATH recommends that any adolescent on puberty-blockers be closely

monitored, preferably by an endocrinologist, “so that any necessary interventions can occur

(e.g., to establish an adequate gender appropriate height, to improve iatrogenic low bone

mineral density)” and remarking that for these patients,

Neither puberty suppression nor allowing puberty to occur is a neutral act. On the

one hand, functioning in later life can be compromised by the development of

irreversible secondary sex characteristics during puberty and by years spent

experiencing intense gender dysphoria. On the other hand, there are concerns about

negative physical side effects of GnRH analogue use (e.g., on bone development and

height). Although the very first results of this approach (as assessed for adolescents

followed over 10 years) are promising, the long-term effects can only be determined

when the earliest- treated patients reach the appropriate age (p. 20).

Thus, while I conclude that the general goal of intersex management is the

production of cisgendered lives, I argue where those efforts fail, intersex management aims

at the production of lives that pass as cisgendered through the use of puberty blockers like

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Lupron. Mallon (2004), defines passing as occurring “whenever a member of some category

is perceived (and allows herself to be perceived) as a member of another, mutually exclusive

category” (p. 646). The use of puberty blockers with intersex adolescents facilitates their

“acquiring the physical appearance of the opposite sex/gender in adolescence and

adulthood” in the same way that it does for their trans* counterparts, and the subsequent

elimination of any futures as visibly or “readably” trans* (Sadjadi, 2013 p. 2). The Clinical

Guidelines’ (ISNA, 2006a) invocation of puberty blockers in the context of both incoherence

between hormone production and gender (i.e. the “wrong hormones”) and gender ambiguity

speaks to this point. Whether we feel uncertain about an individual’s sex at birth (in the case

of intersex) or not (in the case of trans* persons), the assumption is that they will (and

indeed must) come to inhabit a single, oppositional, and univocal gender with which their

body can surgically and hormonally be positioned into cisgendered alignment. The DSD

treatment model thus replicates the OGR model both practically and at the level of

nosology. Like OGR before it, DSD aims at the production of cisgendered lives via appeal

to an additive, linear model of brain organization theory and a notion of hormonally

constituted masculine and feminine brains. Moreover, where cisgendered lives cannot be

secured, medical efforts aim at the production of lives that pass as such, through the

elimination of visibly trans* futures.

All of this, however, assumes—both practically and nosologically—that cisgendered

lives are indeed normal such that gender variant or trans* lives are pathological. Hughes and

the Aaronsons, for example, simply assume the pathology of intersex conditions and thus,

never attempt to justify their identification as such; they simply proceed to lay out and argue

the different ways they see that pathology cashing out. Further, at the level of clinical

practices, securing a cisgendered future is constituted as so important that medical efforts

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work towards making it appear even when it fails to obtain. In this sense, those questions

initially posed under OGR regarding what makes the sex-atypical yet otherwise healthy

bodies of intersex infants and children pathological such that we justify the performance of

non-consensual, cosmetic genital normalizing surgeries upon them remain for DSD.

I find it fascinating that not only do we continue to lack an account of the

pathology of intersex conditions post-Intersex/DSD, but that clinical experts in this

era can both disagree about what constitutes the core pathology of DSDs and fail to

realize they appeal to differing accounts of it. Intersex conditions’ status as pathologies

was the central critique around which both activist and academic engagement with

OGR was organized. Yet, in my review of the biomedical literature on intersex

conditions—and more specifically, in my review of the literature cited by the

Consensus Statement itself—I have only ever found one explicit argument by a

clinician-researcher that both acknowledges the existence of any controversy regarding

the identification of intersex conditions as pathological and explicitly attempts to

defend it. It occurs in a footnote accompanying the first sentence of Kenneth Zucker’s

1999 article “Intersexuality and Gender Identity Differentiation.” In the main text

Zucker writes: “People born with physical intersex conditions (often better known as

hermaphroditism) remind us that the ordinary or ‘normal’ process of physical sex

differentiation is by no means automatic,” while elaborating in the footnote:

The word normal is intentionally surrounded by quotation marks to alert the reader

to one of the current controversies in the literature on physical intersex conditions,

namely whether they should be considered “abnormal” or simply variants of typical

or normal physical sex differentiation in ordinary biological males and females. I

believe that physical intersex conditions are “abnormal,” or, to use Money’s

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descriptor, “sex errors of the body.” I reach this conclusion by following King’s

definition of normal: “that which functions in accordance with its design” (Zucker,

1999, p. 50).

Zucker’s invocation of the Yale graduate student’s nine-page, 1945 treatise “The Meaning of

Normal,” puts him in good company—most notably that of the aforementioned author of

the BST, Christopher Boorse. In his first publication on BST, 1975’s “On the Distinction

between Disease and Illness,” Boorse begins his exploration of the theoretical notion of

disease by invoking C. Daly King’s “admirable explanation of clinical normality” from 1945,

in which he argues that the “the normal” is that which should “objectively and properly . . .

be defined as that which functions in accordance with its design” (Boorse, 1975, pp. 56-57;

King, 1945, pp. 493-494). Reflecting on this in 1997’s “A Rebuttal on Health,” Boorse would

redefine “clinical normality” to “medical normality,” writing “[m]edical normality, as King

said, is functioning according to design. But the species design is, in fact, simply those

functions statistically typical in species members. Given a focus on functions, medical

normality and statistical (nonsub) normality are the same thing” (Boorse, 1997, pp. 17-18).

This 1997 piece is also where Boorse forwards his most current definition of the BST in

terms of the following four steps, including the figure reproduced below.

1. The reference class [emphasis in original] is a natural class of organisms of uniform

functional design; specifically, an age group of a sex of a species.

2. A normal function [emphasis in original] of a part or process within members of the

reference class is a statistically typical contribution by it to their individual

survival and reproduction.

3. A disease [emphasis in original] is a type of internal state which is either an

impairment of normal functional ability, i.e. a reduction of one or more

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functional abilities below typical efficiency, or a limitation on functional ability

caused by environmental agents.

4. Health [emphasis in original] is the absence of disease (pp. 7-8).

Figure 3. Boorse’s Illustration of the Normal and the Pathological

Note. From Boorse, 1997, p. 8.

It is unclear exactly which function Zucker believes is interrupted as a result of the

atypical bodily development of those with intersex conditions; he seems to take this as self-

evident. However, combining the Consensus Statement’s definition of disorders of sex

development with Zucker’s assertion, I argue we can understand the claim that bodies with

atypical chromosomal, gonadal, or anatomic sex development are those unable to function in

accord with their design as invoking a concept of what I will refer to as “The Normal

Functions of Physical Sex” to refer to the concerted function normally played by

physiological sex characteristics such as sex chromosomes, gonads, internal and external sex

morphology, and hormones. This concept can be cashed out in three ways or senses,

referring to three different kinds of function—none of which I personally endorse: 1)

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Reproductive Function referring to one’s physical capacity to reproduce; 2) Hetero-Coital

Function referring to one’s capacity to engage in penile-vaginal intercourse; and 3)

Cisgendered Function referring to the capacity one’s physical sex is assumed to have with

regards to one’s predicted future gender identity, presentation, and behavior.

We often conflate these three “normal functions of physical sex,” in the same way

we tend to conflate the three constituents of the heterosexual matrix—sex, gender, and

sexuality. In fact, this tendency to conflate the latter terms is bemoaned by pretty much

everyone involved in intersex scholarship and activism from clinical researchers, to activists

(e.g. the positioning of intersex as an issue of disordered sex development and not gender), to

academics. This tendency to conflate sex, gender, and sexuality in addition to the three

normal functions of physical sex I have outlined is, I argue, a consequence or artifact of the

historical relationship between these terms/entities in terms of their constitution under

biopower, as well as the way in which this relationship has concretized in the field of medical

knowledge/power first produced through the deployment of sexuality—currently in the

form of brain organization theory. We assume that the normally sexed body is so because of

sex-typical hormone production/sensation, which will result in a cisgendered future that is

characterized by both engagement in hetero-coital intercourse and the desire to reproduce.

Because of our tendency to conflate not only sex, gender, and sexuality, in addition

to the three normal functions of physical sex I outlined above, I turn in the following section

to examine each of these functions in relation to the DSD treatment model’s

recommendations. This exploration might seem unnecessary given that in the previous

sections I concluded that the DSD treatment model aims at the production of cisgendered

lives at the level of both clinical practice and of nomenclature, rendering the pathology of

intersex conditions one constituted in terms of cisgendered function. I undertake it,

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however, for two main reasons. First, because the surgical achievement of the goals of care

that is stipulated by each of these normal functions of physical sex can be at odds with each

other—for example, we often remove the gonads of intersex infants in order to secure

cisgendered function at the sacrifice of reproductive function—examining the clinical

recommendations with regards to these functions will be a matter of seeing which senses are

practically prioritized over others and serve to solidify my conclusions that the role of

intersex management is to ensure that cisgendered lives are made live. Second, given that we

are now almost three decades beyond the first critiques of the pathologization of intersex

conditions and still lack a clear account of their status or nature as pathologies, I seek to fill

this gap in the literature by explicitly forwarding such an account.

V. The Normal Functions of Physical Sex: Reproductive, Hetero-Coital, and Cisgendered

A. Reproductive Function

The first way that function is understood in relation to sex refers to one’s capacity

(or incapacity) to reproduce. One’s ability to reproduce can be hindered by multiple different

variables, most obviously by the capacity of one’s gonads to produce gametes and one’s

capacity to bring one’s gametes together with another’s to create an embryo (presumably

without the use of reproductive technologies).48 The thinking here is that intersex conditions

48 The introduction and ubiquitous use of reproductive technologies from medications that facilitate ovulation to in vitro fertilization or IVF has led to a radical reconceptualization of reproduction in both the medical and popular spheres in a way that is evident in the specific way in which I define Reproductive Function. Reproductive technologies have not only divorced reproduction from heterocoital intercourse (and the desire for it), they has also redfined Reproductive Function and subsequently, infertility as impairment in reproductive function such that I suspect few who have utilized such technologies would think of themselves as infertile. Exploring the relationship between reproductive technologies and the constitution of fertility and infertility—both discursively and non-discurisvely—could easily be its own paper, if not dissertation, and is ultimately beyond the scope of this text. For my

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leave those who have them unable to reproduce either due to sterility or the inability to

engage in reproductive intercourse and thus, intersex conditions are obviously pathological.

Grounding the pathology of intersex conditions in terms of reproduction or impairment to

reproductive function coheres, at least in part, with evolutionary accounts of pathology

according to which any genetic variation which necessarily results in sterility is indeed a

genetic defect, for it results in what evolutionary biologists refer to as a 100% reduction of

Darwinian Fitness or “the probability of surviving to breed times the number of offspring

produced” (Roughgarden, 2009, p. 281).

There is some evidence within the Consensus Statement that Reproductive Function

(or the capacity for it) is one of the targets of treatment. On the topic of fertility the

Consensus Statement’s authors recommend that “surgical management in DSD should also

consider options that will facilitate the chances of fertility,” noting that patients with

“bilateral ovotestes are potentially fertile from functional ovarian tissues” and suggesting the

“technically difficult” surgical separation of ovarian and testicular tissue “be undertaken, if

possible, in early life” (Lee et al., 2006, e492). However, the treatment model’s specific

recommendations regarding the surgical management of hypospadias contradicts the notion

that Reproductive Function is physicians’ primary concern. Regarding moderate to severe

hypospadias patients, who generally have normal testes, but whose urethra opens anywhere

along the shaft the base of the penis, the Consensus Statement writes that “standard

techniques for surgical repair such as chordee correction, urethral reconstruction, and the

judicious use of testosterone supplementation apply” (Lee et al., 2006, e492). It goes on to

caution, however, that purposes here, however, it is enough to be clear that fertility is not an all-or-nothing thing, particularly in a context where reproductive technologies are available. Nonetheless, the DSD treatment model and its recommendations not only treat it as such, but further, fail to take into the account the existence of reproductive technologies.

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The magnitude and complexity of phalloplasty in adulthood should be taken into

account during the initial counseling period if successful gender assignment depends

on this procedure. At times, this may affect the balance of gender assignment.

Patients must not be given unrealistic expectations about penile reconstruction,

including the use of tissue engineering” (Lee et al., 2006, e492).

Phalloplasty has always been a more difficult procedure than feminizing genital

surgeries like vaginoplasty or labioplasty, dependent as it is on the physiological structures

available, which can vary greatly (even amongst those with the same underlying condition).

Indeed, in many ways, phalloplasty is something of a misnomer, for as Kessler wrote in

2002’s Lessons from the Intersexed:

Although there are phalloplasty techniques designed to increase the side of the penis

and to improve penises that are irregular (for example: bent, buried in an abnormally

developed prepuce, or with the glans not proportional to the shaft), the most

common surgeries are not for small or misshapen penises, but for those penises

whose urethral opening is not in the typical location—the center of the glans tip (p.

49).

Thus, phalloplasty in the context of intersex surgical management is generally synonymous

with hypospadias repair. And the willingness of the Consensus Statement authors to sacrifice

the potential fertility of those with hypospadias, the most common DSD with a global

frequency of 1/1725 in its moderate and severe forms, belies a prioritization of Reproductive

Function or the identification of its disruption as constituting the core pathology of intersex

conditions. Generally speaking, surgical sex assignment in all infants and children with

intersex conditions entails either the performance of feminizing genital surgeries

(clitoroplasty or clitoral recession, vaginoplasty, and labioplasty as needed) or masculinizing

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genital surgery (phalloplasty) as well as gonadectomy in order to prevent the development of

both the development of a discordant phenotype and gonadal malignancies. Those with

severe hypospadias assigned female would necessarily be sterilized, as their testicles would

not only prevent the construction of “normal looking” female genitalia, but would produce

testosterone resulting in the development of masculine characteristics.

While avoidance of gonadal malignancy is often cited as motivating gonadectomy,

very little data exists regarding the actual risks of malignancy, and thus the primary reason

for these procedures is avoiding the development of a phenotype that might conflict with

sex of assignment given that. For example, the Consensus Statement includes a table titled

“Risk of Germ Cell Malignancy According to Diagnosis” compiling information from over

1,400 studies of a total of 83 patients (Lee et al., 2006, e493). While a high risk is clear in

certain cases, this is the exception rather than the rule (for example, patients with intra-

abdominal gonads which display gonadal dysgenesis and have the portion of the Y

chromosome that contains TSPY (testis-specific protein Y encoded) gene appear to have a

15-35% risk of gonadal malignancy, though this determination is itself based on >350

studies of the same 12 patients). For the majority of cases, we have very little evidence upon

which to recommend gonadectomy over, say, a “wait and see” approach using regular

screenings which would have the additional benefit of avoiding potential risks associated

with synthetic rather than endogenous hormone exposure (ISNA, 2006a, 2006b; WPATH,

2012). It is, for example, unclear why we should consider the determination that

Ovotesticular DSD carries a 3% risk of germ cell malignancy from 426 studies of 3 patients

or that those with PAIS and nonscrotal gonads face a 50% risk of germ cell malignancy

based on 24 studies of 2 patients as valid determinations of the true risk these patients face

or base treatment recommendations on them (See Table 4, Consensus Statement, e493).

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Furthermore, in a 2005 practical guide cited by the Consensus Statement, “Hormonal

Therapies for Individuals with Intersex Conditions: Protocol for Use,” Warne, Grover, and

Zajac identify the primary goals of hormonal therapy (which they note “forms part of the

treatment of every intersex condition”) as 1) replacing hormones necessary for survival for

those with salt-wasting CAH and 2) suppressing the unwanted hormone excess [emphasis added]

by exerting negative feedback” (p. 19). The “unwanted hormone excess” Warne and his

colleagues are referring to here are those hormones which, as the Aaronsons would put it,

might lead to a “discordant” phenotype, or a physical gender presentation that conflicts with

sex of assignment. Thus, while Reproductive Function may be one of the targets of intersex

management practices, it is clearly not the target.

B. Hetero-Coital Function

The Consensus Statement’s recommendation regarding the surgical management of

hypospadias does, however, provide evidence for the second sense of the Normal Function

of Physical Sex. I argue we might understand Zucker as invoking in his argument for the

pathology of intersex—Hetero-Coital Function. I define Hetero-Coital Function as referring

solely to the physical capacity to engage in penile-vaginal intercourse independent of

reproduction and independent of heterosexual desire, though it is worth noting that the

physical ability to engage in heterosexual sex and the desire to have it are often conflated.

Allowing for “vaginal-penile intercourse” is indeed one of the three aims of genital

normalizing surgeries identified by gynecologist Sarah Creighton and her colleagues in their

2012 Journal of Pediatric Urology review article “Timing and Nature of Reconstructive Surgery

for Disorders of Sex Development–Introduction,” along with “improv[ing] the cosmetic

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appearance of the genitals” and “achiev[ing] an unobstructed, sex-typical manner for

urination (i.e. standing for males)” (Creighton et al., p. 603).

It is well established within the literature that both heteronormative definitions of

“normal sexual activity,” and a clinician’s surgical capacity to fashion genitals capable of

engaging in it, played a large role in physician recommendations regarding sex assignment

under the OGR treatment model. As Suzanne Kessler detailed in her foundational text

Lessons from the Intersexed, Money felt the ability to engage in normal sexual activity was

necessary for one’s normal psychosexual or gender role development, which for him

encompassed what we today would differentiate as gender behavior, gender identity, and

sexuality. His definition of normal sexual activity, however, was thoroughly heteronormative,

equating the ability for it with having a normal-appearing vagina capable of penetration by an

average size penis for a woman and with having a normal-appearing, average size penis

capable of penetrating a vagina to orgasm for a man; a woman’s capacity for orgasm was not

considered (Kessler, 1998, pp. 24-27). The technological limitations of phalloplasty

compared to vaginoplasty (“it’s easier to dig a hole than build a pole”), as well as the

dependence of the former surgery’s success on the physiological structures available, meant

that Money’s phallocentrism cashed out as the general rule that physicians were never to

“assign a baby to be reared, and to surgical and hormonal therapy, as a boy, unless the

phallic structure, hypospadiac or otherwise, is neonatally of at least the same caliber as that

of same-aged males with small-average penises” (Money, 1975, p. 610; qtd. in Kessler, 1998,

p. 25). The primary determination of sex assignment was the capacity to make a “normal

phallus”—if one could not be made, patients were to be assigned female. It is thus

completely unsurprising that Kessler found that although all of the physicians she

interviewed identified the “prospects of constructing good genitals” as their primary

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consideration when making sex assignments, they also cited the specialty of the attending

physician as of central importance to these decisions, given that a physician’s specialty in

many ways determines their capacity to construct “good genitals” (p. 27).

The “Surgical Management” section of the Consensus Statement recommends that

surgery “only be considered in cases of severe masculinization” that is, Prader stages III-V

(see Fig. 4), and “be performed in conjunction, when appropriate, with repair of the

common urogenital sinus” – a more moderate position than the OGR treatment model

which recommended surgery whenever the treating physician deemed it appropriate (Lee et

al., 491).

Figure 4. The Prader Scale from Source: Medscape Reference

Note. From: http://emedicine.medscape.com/article/924291-overview

However, we already know that there has been no decrease in the frequency with which

these surgeries are performed, despite the Consensus Statement’s apparent leniency.

Furthermore, evidence that surgical management aims in part at restoring a thoroughly

heteronormative conception of sexual function, or Hetero-Coital Function remains.

Despite the Consensus Statement’s comparative tolerance with regards to less severe

genital ambiguity, it nonetheless recommends surgery in more severe cases. In these cases,

the authors stipulate that the emphasis in surgical management should be on “functional

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outcome rather than a strictly cosmetic appearance” while at the same time acknowledging

the practice as being motivated by aesthetic concerns, specifically stating that “it is generally

felt that surgery that is performed for cosmetic reasons in the first year of life relieves

parental distress and improves attachment between the child and the parents; the systematic

evidence for this belief is lacking” (Lee et al., 2006, e491). In fact, serious tensions are clear

throughout the section on surgical management, as the authors clearly acknowledge the risks

associated with genital normalizing surgeries, particularly with regards to function, while at

the same time stressing the importance of “functional” rather than aesthetic outcomes. Both

the subsection on feminizing surgeries and the subsection on masculinizing surgeries detail

the technical limitations of, and possible complications associated with these procedures, as

well as the lack of outcomes studies available for a variety of those most commonly

performed techniques, yet nonetheless position them as necessary. For example, in the

section regarding feminizing genital surgery techniques, the Consensus Statement cautions

that “orgasmic function and erectile sensation may be disturbed by clitoral surgery” and thus

recommends that surgical procedures be “anatomically based to preserve erectile function

and the innervation of the clitoris,” with emphasis again placed on “on functional outcome

rather than a strictly cosmetic appearance” (Lee et al., 2006, e491). It goes on to endorse

vaginoplasty in infancy on the basis of guidelines created by the American Academy of

Pediatrics in 1996, while at the same time acknowledging “that surgical reconstruction in

infancy will need to be refined at the time of puberty” and that “no one technique has been

universally successful; self-dilation, skin substitution, and bowel vaginoplasty each have

specific advantages and disadvantages” (e492).

Interestingly, beyond the above-mentioned caution that clinicians consider “the

magnitude and complexity of phalloplasty” required if “successful gender assignment

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depends on this procedure,” the Consensus Statement says fairly little regarding

masculinizing genital surgeries. In their 2012 review of surgical management options for

DSDs, however, Creighton et al. invoke Hetero-Coital Function in their identification of the

goals of “proximal hypospadias repair” (which we might read as synonymous for

phalloplasty) as allowing for 1) the ability to urinate in a standing position, 2) “achieving

straight erections and proper ejaculation” which are seen as the conditions that will

“permit,” 3) “suitable sexual intercourse” (Creighton et al., 2012, p. 607). They nonetheless

conclude that despite the fact “most surgeons still agree that hypospadias surgery should be

done early (especially for proximal cases), the quality of the evidence for such an approach is

limited and will likely be challenged until there is additional strict scientific data in support of

it” (p. 608).

Compared to the authors of the Consensus Statement, Creighton and her colleagues

present a far more agnostic view regarding the efficacy of genital normalizing surgeries. They

begin their review by explicitly acknowledging that as a result of “evidence that many adult

patients who have undergone reconstructive surgery are dissatisfied with the outcome

because of reduced sexual satisfaction and function” heated debate exists regarding “the age

at which surgery is best conducted, which type of procedure offers the best outcome and

whether surgery should be performed in all” despite the fact that “such procedures have

been performed for decades” (p. 603).

Importantly, though Creighton and colleagues mention reduced sexual satisfaction, I

argue that the priority here is genitals that look “normal” and are capable of penetration or

of being penetrated as opposed to those capable of what we might think of as sexual

satisfaction in terms of sensation and the ability to orgasm—echoing my definition of

Hetero-Coital Function. It is no coincidence that Creighton and her colleagues initially

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identify the physical capacity for vaginal-penile intercourse, cosmetic appearance, and, for

men, being able to urinate standing up as the goals of genital normalizing surgery and that

genital sensation or orgasm are not listed at all. Interlocuters on both sides of the debate

regarding surgery have noted that parents of affected children are both concerned about

their child’s ability for future sexual ability and satisfaction, and wary of or uncomfortable

with discussion about these aspects of their child’s treatment (Feder, 2014; Karkazis, 2008;

Karkazis, Tamar-Mattis, & Kon, 2010). Thus, despite all this emphasis on functional

outcome, genital sensation and the ability to orgasm are rarely explicitly discussed. However,

I argue that it would be a mistake to attribute the persistant silence on these issues in both

the clinical literature and in the doctor’s office to taboo alone—though that surely is part of

it. Rather, I argue that its persistence in the face of both parental concerns about the genital

sensation and future sexual satisfaction of intersex infants and the mounting evidence

mentioned by Creighton et al. that normalizing surgeries compromise both is primarily the

result of the fact that ensuring an infant has genitals capable of Hetero-Coital Function and

ensuring an infant has genitals capable of sensation and orgasm are necessarily contradictory

in this context. Genital normalizing surgeries carry the same kind of risks associated with any

kind of surgical procedure—most importantly for the purposes of this discussion, nerve

damage and the development of scar tissue, both of which compromise genital sensation and

the ability to orgasm.

On the rare occasions that these issues are raised or positioned as a factor in the

medical decision-making process, it is done in as heteronormative a fashion as ever before.

The inability to create genitals capable of orgasm is only ever positioned as a factor in gender

assignment in relation to phalloplasty procedures, though notably the emphasis here is not

on the individual’s personal sexual satisfaction, but their ability to replicate what is

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positioned as typical or normal male sexual behavior in terms of visible cues or aesthetic

function. Evidence of this can be seen in Creighton et al.’s (2012) inclusion of “achieving

straight erections and proper ejaculation that will permit suitable sexual intercourse” (p. 607)

in their stated goals for phalloplasty; it is not enough to simply be capable of erection,

ejaculation and sexual intercourse—it must be a straight erection capable of proper

ejaculation in the context of suitable intercourse. However, nowhere is the subservience of

genital capacity for sensation and orgasm to the ability to penetrate (or be penetrated) via

aesthically typical genitals clearer than in the context of feminizing surgeries and in

particular, surgeries to reduce clitoromegaly or enlarged though otherwise healthy clitorises.

For its part, the Consensus Statement recommends the performance of both

vaginoplasties and clitoral reductions or clitoroplasties (again, in those cases of severe

masculinization) despite acknowledging the risks/problems associated with both in terms of

loss of sensation and potential scarring. Regarding vaginoplasty the authors write that

techniques “carry the potential for scarring at the introitus necessitating repeated

modification before sexual function can be reliable” (Lee et al., 2006, e493). However, on the

topic of clitoroplasty they are even more explicit, identifying them to be solely cosmetic

procedures done for the sake of relieving parental distress and promoting attachment (while,

again, acknowledging a lack of evidence that these surgeries accomplish these goals), and

explicitly stating that “outcomes from clitoroplasty identify problems related to decreased

sexual sensitivity, loss of clitoral tissue, and cosmetic issues” (e493). Despite this, they

continue to recommend the performance of these procedures, simply cautioning that

“because orgasmic function and erectile sensation may be disturbed by clitoral surgery, the

surgical procedure should be anatomically based to preserve erectile function and the

innervation of the clitoris” (e491). This caution seems to imply that we know which

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“anatomically-based” surgical procedures will preserve erectile function and the innervation

of the clitoris and thus it is simply a matter of choosing those techniques over those that

prioritize cosmetic outcome. Creighton et al. (2012), however, make clear the lack of

consensus or clarity on the best or most effective surgeries, emphasizing the complete lack

of scientific evidence for any of the surgical techniques commonly used in clitoroplasty or

vaginoplasty in terms of their efficacy and ideal timing (p. 605). As a result, they conclude

that it is ultimately impossible to recommend any of these surgical techniques, either on their

own, or over any others (p. 605). Despite this, they too continue to recommend their

performance, while at the same time reinscribing a heteronormative conception of normal

Hetero-Coital Function for women through their identification of the goal of clitoroplasty

(which they acknowledge to be “essentially a cosmetic procedure”), as “reduc[ing] the size of

the clitoris whilst maintaining a feminine appearance,” [emphasis added] and their simultaneous

acknowledgement that “surgery carries the risk of disruption of the nerve supply of the

clitoris” (p. 603). Regarding clitoroplasty specifically, they write,

Most descriptions of clitoral reduction techniques usually report small series of

patients with limited follow-up; there are no comparative studies of the short or

long-term advantages of specific techniques. There is much debate but little data on

all aspects of clitoral surgery including the appropriate size and site for incisions on

skin and crura, whether or not to anchor the clitoris to the bony pelvis, how much

corporal tissue to remove as well as the requirement for reduction of the glans

clitoris and what techniques best achieve this (p. 603).

Similarly, Creighton et al. invoke heteronormative ideas of Hetero-Coital Function in their

identification of creating “ a vagina suitable for menstruation and sexual intercourse” as

among the goals of vaginoplasty (in addition to maintaining urinary continence) (p. 605).

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They prioritize Hetero-Coital Function over Reproductive Function in their

recommendation that sterilizing gonadectomies continue to be performed. Further, they

identify the goals of gonadectomy as first the “preserv[ation] of gonadal function (sex

hormone production in accord with sex of rearing and fertility)” and second, “[the]

avoid[ance of] gonadal malignancy” (p. 608).

Creighton et al’s inclusion of fertility in their identification of “the preservation of

gonadal function” is interesting here, for gonadectomy, as it is generally performed,

necessarily leads to a loss of fertility.49 However, their identification of gonadal function with

“hormone production in accord with sex of rearing” (or gender assigned) is, I argue, very

illustrative and gestures specifically to ensuring the development of a coherent phenotype (or

in the Aaronsons’ words, preventing the development of a “conflicted phenotype”).

Maintenance of a “coherent” phenotype—that is, a body that develops in concordance with

sex of assignment—is considered necessary for both Hetero-Coital Function and for the

third and final sense of The Normal Function of Physical Sex commonly deployed, that of

Cisgendered Function.50 Indeed, bodies that are unambiguously and typically male or female

49 There are certain surgical techniques which attempt to remove so called discordant gonadal tissue only, i.e resecting testicular tissue while leaving ovarian tissue. This is recommended by both the Consensus Statement (p. e492) and Crieghton et al. (p. 608). Unfortunately, however, I am unable to get a clear sense from the literature reagarding how often this type of discrete surgical procedure is performed vs. complete gonad removal. Thus, while I am willing to grant that this occassionally does occur, it does seem to be quite rare and thus my use of the term “as it is generally performed.” That being said, even in the context of those kinds of practices, it’s not clear to me that the primary goal of resection is the preservation of fertility over and above the development of a coherent phenotype given that the presence of cells producing the hormones of the “wrong sex” would have a more of an effect on the latter (phenotype development) than on the former (fertility) given how many women with high levels of testosterone (such as women with CAH) are nonetheless fertile. 50 Insofar as a “coherent phenotype” is taken as a sign for Normal Reproductive Function, it is also generally considered necessary for that as well. This accounts for the disorientation caused by and the spectacle made of those who exhibit signs of reproductive function which conflict with their gendered phenotype (e.g. pregnant butches).

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are bodies that are capable of both engaging in heteronormative penile-vaginal intercourse,

and serving as the immutable, stable ground for predictions regarding the notoriously fluid

and culturally mediated entities of gender and sexuality. However, I argue that Creighton et

al.’s identification of gonadectomies with “the preservation of gonadal function” can only be

made sense of if one defines gonadal function in terms of cisgendered hormone production

and thus, in terms of Cisgendered Function.

C. Cisgendered Function

Bodily sex is assumed to predict future gender identity, gender presentation (hence

the emphasis on maintaining a coherent phenotype), and gender role or behavior. Our

inability to determine clearly or categorize the body of an individual with an intersex

condition—or even the mere fact their body calls the naturalness and stability of dimorphic

sex into question—leaves sex unable to perform its function as the primary, most stable,

grounding term in our constellation of sex, gender, and sexuality. This is why unlike those

strategic endorsers of DSD who identify the problems of DSD management (which they

seek to solve) as unnecessary genital surgeries, bureaucratic obstacles to accessing competent

care, and an obsession with gender and genitals, Warne and his colleagues identify the

problem of intersex conditions in terms of them being “difficult to treat,” specifically

because “they may intrinsically perturb complex aspects of the person’s gender identity,

gender-role behavior, sexual orientation, sexual functioning and psychologic adjustment”

(Warne et al., 2005, p. 19). Thus it seems that like the OGR model before it, the DSD

treatment model aims at the securing of cisgendered futures and thus, ultimately, the

production of cisgendered lives.

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There are reasons outside of the practices carried out under the DSD treatment

model to believe that Zucker (1999) is invoking Cisgendered Function in his remark about

intersex bodies failing to function in accord with their design, and that this remains the

ultimate aim of intersex management. Aside from Zucker’s article itself being specifically on

the topic of Gender Identity Differentiation in those with intersex conditions, gender

identity development in general (particularly in children) is Zucker’s recognized area of

expertise. More importantly, however, sex assignment remains both the central feature of

intersex clinical management and is commonly identified as the primary concern of both

clinicians engaged in it and parents of intersexed children, who want to know whether to

raise their child as a boy or a girl. Indeed, the issue of sex assignment and gender identity

differentiation dominates the biomedical literature on intersex conditions and their

management. In a 2012 article in the Journal of Pediatric Urology, Liao and colleagues write that

“professional concerns regarding sex assignment” are “reflected in the relatively high

proportion of psychological studies devoted specifically to psychosexual differentiation

outcomes, as opposed to other clinical concerns, such as patient experience and emotional

well-being” (Liao et al., 2012, p. 598). For example, they note that a recent review of 98

original studies on patients with congenital adrenal hyperplasia from 1955 to 2009, found

that 68% investigated aspects of psychosexual differentiation (Liao et al., 2012). The goal of

these studies of psychosexual differentiation, and of sex assignment, is always securing a

cisgendered future through the prevention of trans* or gender variant futures.

I thus conclude that the DSD treatment model aims, like the OGR model before it,

at the production of cisgendered lives. Clinicians are still attempting to determine the

intersex infant’s “optimal gender of rearing”—currently via an appeal to brain organization

theory—and thus continue along the path constructed by Money of fixing sex by way of

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gender such that sex remains gender all along. Furthermore, puberty blockers are a new

technology in this field of medical knowledge/power whereby those lives that are not in fact

cisgendered can be made to pass as such. Thus it seems that not only has nothing changed

from intersex to DSD, but the few differences we do see between the OGR and DSD

treatment model result from the scientific and popular dominance of notions of “brain

gender,” leaving us with a more biologically determinist model than its predecessor.

VI. Conclusion

When an infant is born, the announcement that “it’s a boy” or “it’s a girl” is

simultaneously an assessment of physical sex (where externally visible genitalia is taken as a

indicator of other markers of physical sex such as chromosome status and internal genital

structures, etc.) and a prediction about their gendered future in terms of identity, behavior,

and non-sexual desires (though to be sure, sexual desire is often also assumed to be a

dimension of gender). Further, it is also an indictor of which social and political norms

govern engagement with this individual—that is, whether or not we should treat them like a

boy or a girl. “Treating one like a boy or a girl” is itself a multi-dimensional, multi-variable,

reciprocal engagement, encompassing not only norms about how others should treat them,

but further, how we expect them to treat themselves and others. For example, knowing

whether or not an individual is a boy or a girl entails knowing what norms govern their

behavior, thoughts, desires, as well as the behavior, thoughts, and desires of others towards

them.

When markers of sex fail to perform this function, we are unable to predict future

gender (which is always appropriately presumed to be in a coherent cis-alignment with

physical sex) or have a sense of the norms with regards to either gendered or sexed

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interaction with them. This, I argue, is the reason why cosmetically normalizing genital

surgery is justified via two specific claims, neither of which is supported by clinical evidence:

1) that “normal” looking genitals are necessary to one’s “normal” psychosexual development

as unambiguously cisgendered and 2) that an infant must have “normal” genitals and thus

appear to have a typically-sexed body for parents to bond with it and raise it in an

unambiguously cisgendered way, and for others to treat it like a boy or a girl, both of which

are posited as essential to a child’s “normal” psychosexual development as unambiguously

cisgendered.

Importantly, while continuing to position bipolar sex on the side of the natural, this

account positions gender as necessarily both natural and socially mediated. Indeed, having a

brain that has been organized by hormones in a typically male or female fashion is not

enough for normal cisgendered development—others must also treat you like a boy or a girl

in order for you both to know that you are one, and for you properly to become one. This is

a sign of the fact that gender is a technology of biopower, introduced into the field of

medical/knowledge power in order to strategically shift or displace the naturalized binary of

sex in the face of sexed bodies which revealed it as fiction.

It is ironic that gender, the most mediated, impure, and unstable element of our

constellation of sex-gender-sexuality, is the term that has become saddled with the heavy

work of stabilizing the truth of sex. Sexuality seems far more capable of this kind of heavy

lifting than something as notoriously fluid and culturally mediated as gender. Though these

arguments are fallacious, sexuality’s closer proximity to reproduction allows for the

invocation of evolutionary arguments regarding Darwinian Fitness more easily than gender

or sex does. Indeed, the argument about homosexuality runs: how can a trait that leads one

not to want to copulate with specifically those individuals with whom they can exchange

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gametes not be maladaptive? 51 However, the declassification of homosexuality as a mental

disorder by the American Psychiatric Association in 1973 and by the American Psychological

Association in 1975 means that sexuality is unable to provide this clinical ground for either

sex or gender, though it is worth noting that under the OGR treatment model, homosexual

activity or desire in those with intersex conditions was taken as an indicator of incorrect sex

assignment (Zucker et al., 2013).52 This, I argue, is in part an artifact of Money’s initial

definition of gender role in such a way so as to collapse into it what we would call both

gender identity and sexual orientation.

With sexuality unable to do this work and in the absence of a true unambiguous

single marker of sex or the insertion of a new term into the field of medical power-

knowledge that takes up and governs bodies as sexed, gendered, or sexual, I argue that

clinicians really have no other recourse than to continue Money’s legacy of turning to binary

gender as the ground for the naturalization and materialization of dimorphic sex in the face

of its bipolar reality. This project is essential to justifying the continued medical management

of not only intersex bodies, but the general government of all bodies with regards to norms

of sex and gender. It should thus, I argue, be no surprise that despite decades of critique, and

in spite of equivocating, shoddy outcome studies with few participants and a poor

understanding of the development of gender in all its dimensions, the DSD treatment model

continues the tradition set out by the OGR treatment model of using experimental, cosmetic

procedures to assign sex surgically on the basis of predictions about gender development

(and in particular, a clinician’s capacity to bring the development of a specific gender about).

51 This argument, of course, is fallacious. For more on problems with evolutionary arguments for the pathology of homosexuality see Roughgarden, 2004. 52 Furthermore, there was a period when many transpersons were unable to access sex reassignment services if their transition might make them homosexual (Zucker et al., 2013).

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A side effect of Money’s introduction of gender to “fix” the sex of the intersex is, I

have argued, the appearance of the transsexual in the field of medical knowledge/power first

constituted by the deployment of sexuality. The introduction of gender gave us a way to read

the pathology of the trans* individual in terms of cisgendered function—for their bodies

also fail to develop a cis-aligned gender, despite being typically sexed. This gave rise to the

narrative of being born in “the wrong body,” with gender constituting the truth of sex. A

side effect of the current biomedical understanding of gender in terms of brain organization

theory, and thus as both natural or biological and culturally mediated, is a kind of collapse of

the distinction between sex and gender, and the resurgence of a kind of biological

determinism in the form of brain sex/gender. Evidence of this can be seen in the shift in the

literature to replace “sex assignment” with “gender assignment” (or at least use the two

synonymously), as can be seen in prominent psychiatrist Heino Meyer-Bahlburg’s

introduction to a 2005 special issue of the Archives of Sexual Behaviour, devoted to the topic of

gender identity development in those with intersex conditions, in which he writes, “the

question of how gender assignment [emphasis added] at birth should be decided in cases of

intersexuality and related conditions, so as to minimize the later development of gender

dysphoria and gender change, is one of the highly controversial issues in the ongoing debate

on clinical management policies in this area” (Meyer-Bahlburg, 2005a, p. 371). 53

Furthermore, in a section titled “What to Tell Your Friends and Family In General,” the

Handbook for Parents provides parents with the following scripted answer for friends and

family who question the sex of their child, which justifies it specifically in terms of gender

development:

53 The Consensus Statement also uses the language of gender assignment.

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Sometimes babies are born with a body type that is not either the average male or

female. This is a variation that happens about one in every 1500 births. In our daughter

Sue’s case, we figured out with our doctors that Sue should be raised as a girl since most children

with Sue’s condition tend to follow along with that gender [emphasis added] (ISNA, 2006b, p.

40).

Even more explicit evidence of this collapse between sex and gender via the

use of brain organization theory can be found in Meyer-Bahlburg’s 2011 book chapter

“Transsexualism (‘Gender Identity Disorder’)—A CNS-Limited Form of

Intersexuality?” and in a 2012 commentary by Zucker titled “Born This Way:

Comment on Factitious Intersex Conditions.” Meyer-Bahlburg concedes there isn’t

enough evidence to make the claim that transsexuality is a central nervous system

limited form of intersex, though the question itself attests to the potential collapse

between sex and gender occurring at the level of the brain. Zucker, however, was far

more willing to hedge his bets on this point in his commentary on Cadet and

Feldman’s 2012 article in which the two authors argue that trans* patients are more

likely to claim to have an intersex condition due to the internet, and that these false

claims should be identified as a factitious disorder or Munchausen syndrome (Cadet &

Feldman, 2012). In his commentary, Zucker elaborates on Cadet and Feldmen’s (2012)

claim and agrees that an increasing number of trans* patients do present to

psychiatrists claiming to have an intersex condition, but justifies this by invoking

determinist theories of brain gender to argue that “Lady Gaga may well be on to

something” and hazarding that by 2020, we should have enough evidence to prove

that they too were “born that way” (Zucker, 2012, p. 98).

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Importantly, all of this—the DSD treatment model, the pathologization of

intersex and trans* persons with regards to cisgendered function, and both the reliance

on and pursuit of research like brain organization theory in order to make sense of and

thus treat these individuals—presumes the pathology of non-cisgendered life. That is,

it assumes the failure of the sexed body and the gendered self to developed in cis-

alignment is in itself necessarily pathological and thus worthy of both study and

“fixing.” In the following chapter, I reconstruct and then critique the most compelling

philosophical answers to the question that clinicians tacitly believe has a self-evident

response: Is being gender variant or non-cisgendered a pathology?

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Chapter Four: Securing Cisgendered Lives:

A Critical Analysis of the Pathologization of Gender Variance

I. Introduction Having established that the DSD treatment model aims—like the OGR model

before it—at securing cisgendered futures for intersex infants and thus, at the production of

cisgendered lives, I turn in this chapter to examine critically the pathologization of non-

cisgendered or gender variant lives. The presence of pathology is not, in itself, a necessary

condition of medical intervention. There are pathological states that we do not normalize

(like asymptomatic bacterial vaginosis), while there are bodily states we think it ethical to

medically surveil and normalize even though we think them to be non-pathological (like

pregnancy). Ethical medical practice or decision-making is constituted through a multitude

of variables, necessarily including (but not limited to): clinical evidence regarding the

diagnosis, prognosis, and treatment options; clinical ignorance regarding the diagnosis,

prognosis, and treatment options; the values and desires of the patient; as well as whether or

not the patient provided informed consent (which is itself conditional on their ability to do

so). Borry, Schotsmans, and Dierickx (2006) note the tendency within clinical medicine to

equate evidence-based practice with ethical practice, as though empirical data is sufficient for

determining ethicality, thus completely conflating its implications. While empirical evidence

regarding both the nature of a pathology, and the clinical interventions used to treat it,

cannot “conclude [emphasis added] the process of ethical decision-making,” it is necessary for

that process (Borry et al., 2006, p. 307). Further, this information seems to be particularly

important to ethical medical decision-making where those unable to provide informed

consent (such as children) are concerned. Indeed, it is in the context of such cases that we

come across those rare situations when such information can and does conclude the process

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of ethical decision-making—most obviously, when one’s life or viability are at risk. For

example, in the case of a 5 year-old Jehovah Witness child requiring a live-saving blood

transfusion, the pathology and prognosis without treatment is enough to justify its

administration, despite the grave metaphysical implications receiving it has for members of

that faith (the inability to join one’s family in the afterlife). Furthermore, most ethicists agree

that in such cases, health care professionals are morally obligated to intervene not only

without the patient and their proxy decision-makers’ consent, but even in the face of their

explicit refusal, undertaking legal strategies to do so if necessary. In this way, both the

biomedical account of the pathology of intersex conditions that I offered in the last

chapter—rendered, traditionally, in terms of function—and the critical analysis of it I offer

in this one, contribute a vital piece to the ethical puzzle in scholarship on intersex

management, especially with regards to infants and children.

Beyond those with intersex conditions, the critical analysis of the pathologization of

gender variance I offer in this chapter also has important implications for ethical medical

decision-making regarding the treatment of gender dysphoria—as a pathology of

cisgendered function—particularly in children unable to provide informed consent. In

particular, it will have implications for the controversial use of so-called “conversion” or

“reparative” therapies that aim at the production of cisgendered life for children diagnosed

with gender dysphoria (or what was previously called gender identity disorder). These

therapies, which Drescher (2010) calls “Gender Identity Conversion Efforts (GICE)” aim at

lessening both gender dysphoria and gender variance in trans* kids in terms of their “cross-

gender behaviors and identification” and include “promotion of same-sex peer relations;

encouragement of gender-typical and ‘neutral’ activities; limit-setting of cross-gender

behavior; and dialogues on gender” between both the physician and the child, and the

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parents and the child (Drescher, 2010, p. 451; Zucker, 2008, p. 360). Much like the surgical

and hormonal management of intersex children, the aim of GICE is securing a cisgendered

future for the child with Gender Dysphoria (GD), by preventing its “persistence” into

adolescence and adulthood, and thus, their eventual transition (Byne et al., 2012, p. 763).54

II. Pediatric Management of Intersex Conditions and Gender Dysphoria: Medical Efforts to Secure Cisgendered Lives The treatment of queer and trans* kids has received a good deal of very high profile

attention in the past year. In April 2015, President Barack Obama quietly announced his

condemnation of “conversion” therapies aimed at “repairing” LGBTQ individuals in

response to the suicide of 17-year old transgender teen Leelah Alcorn, whose parents had

withdrawn her from school and forced her to attend “conversion therapy” (Jarrett, 2015).

The official statement, written by one of Obama’s senior advisors and posted to the White

House’s website alongside a petition to enact “Leelah’s Law” banning “all LGBTQ+

conversion therapy,” states explicitly states that the Obama Administration “supports efforts 54 There is no evidence that GICE is used to treat adolescents or adults with GID or Gender Dysphoria under DSM-V, and its use (or the appropriateness of its use) in these populations is not debated in the literature as it is with regards to children. I argue there are two reasons for this: 1) There is a good deal of clinical evidence to support the notion that the majority of those whose gender dysphoria and variance persist into adolescence or who are diagnosed in adulthood do end up transitioning, and thus, given that this is the trajectory the majority of these individuals are already developing along (as opposed to the minority in the case of children), there’s no point in attempting to reverse that trajectory—such efforts will generally fail (Byne et al., 2012, p.736). 2) Even though it is never framed this way in the literature, I argue that the use of GICE in the context of adolescents or adults with GID or Gender Dysphoria would likely constitute a violation of autonomy. As I will discuss later in this chapter, Gender Dysphoria is one of the few diagnoses within the DSM in which an individual’s failure to cohere to social norms and their resultant social exclusion and stigmatization are acknowledged to play a major role in its etiology or development. Furthermore, the way in which we lessen their symptoms (and the way in which individuals want to have their symptoms lessen) is by confirming their gender variance via surgical and hormonal intervention. To use GICE in this context would be to try to make competent adults and mature minors both desire a cisgendered life and ultimately to take on a different interpretation of themselves in terms of gender. I think that this would look like coercion in the context of the clinic.

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to ban the use of conversion therapy for minors,” which it describes as having been proven

by scientific evidence to be “neither medically nor ethically appropriate and can cause

substantial harm” (para. 4). Rather than turning to conversion therapies, which they define in

terms of both GICE and Sexual Orientation Change Efforts (SOCE), the statement stresses

the importance of familial support to the well-being of the LGBTQ+ child, writing that “this

Administration believes that young people should be valued for who they are, no matter

what they look like, where they’re from, the gender with which they identify, or who they

love” before providing a list of resources under the categories of Bullying, Family

Acceptance and LGBTQ+ Youth Homelessness (para. 13). Furthermore, an NDP member

of the Ontario Parliament, Cheri DiNovo, tabled a bill in March 2015 that would bar

Ontario health care professional from treating LGBT children and teens with so-called

conversion therapies (Pyne, 2015, 14). DiNovo’s tabling of the bill came just months after a

petition appeared online calling for Zucker’s termination from his position as head of the

Gender Identity Clinic at Toronto’s Centre for Addiction and Mental Health (Roche, 2014)

In response to the bill’s tabling and following years of complaints about Zucker and the

clinic’s use of GICE with trans* kids, CAMH announced on March 19, 2015 that the clinic

would undergo a 6-month external review “in response to community concerns” (Pyne,

2015, 14). It is still unclear at the time of writing whether GICE will remain the standard of

care for trans* kids at CAMH. However, the clinic’s founder and Zucker’s colleague Susan

Bradley has issued an open letter calling upon DiNovo to withdraw her bill, arguing that the

legislation would “infringe upon a patient and their parent’s rights to seek appropriate

treatment for their children” (as qtd. in Pyne, 2015, 14). In comments issued to The Toronto

Star newspaper, CAMH medical director Kwame McKenzie described the situation by

stating, “Therapists are caught in the middle, between parents who may want their girl to be

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a girl, and boy to be a boy . . . and at the moment, you have some professionals who say

‘OK, we should support the parents,’ and some people in various groups in the community

who say ‘no, you should support the child here’” (as qtd. in Rushoway, 2015, n.p.).55

The controversy over the use of GICE in trans* kids has left many psychiatrists on

the defensive about the practice. GICE is but one of three different approaches to treating

trans* kids in found in the clinical literature, with the second approach being one that

“makes no direct effort to lessen gender dysphoria or gender atypical behaviors” given that

GID does not persist beyond childhood for the majority (~80%) of those diagnosed, and

the third being one that “may entail affirmation of the child’s cross-gender identification by

mental health professionals and family members)” (Bynes et al., 2012, p. 763).56 Critics,

however, have charged that the use of GICE is unjustifiable, analogizing it with the

unjustifiable submission of individuals to SOCE under the now illegitimate diagnosis of

Homosexuality (Drescher, 2010; Zucker & Spitzer, 2005). Furthermore, some have argued

that GICE is merely SOCE by another name, a relabeling done in order to ensure that

psychiatrists could still treat queer kids with SOCE after the removal of Homosexuality from

the Diagnostic and Statistical Manual (DSM) (Pickstone-Taylor, 2003). This is why psychiatrists

like Zucker and Spitzer (2005) have taken such pains to separate clearly GICE from SOCE

in recent years, the latter of which they identify with the terms “conversion” or “reparative”

therapy. In their article “Was the Gender Identity Disorder of Childhood Diagnosis

Introduced into DSM-III as a Backdoor Maneuver to Replace Homosexuality? A Historical

Note,” Zucker and Spitzer argue that GICE is not simply SOCE or a “backdoor” way to

55 This bill passed unanimously on June 4, 2015 (Ferguson, 2015, n.p.) 56 Byne et al. (2012) report that although “the rate of persistence [of gender dysphoria] into adulthood was initially reported to be exceedingly low . . . more recent studies suggest that it may be 20% or higher” with one study of 77 children (59 boys and 18 girls) finding a persistence rate of 27% (p. 769).

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treat homosexuality following its 1973 removal from DSM-II by, in part, pointing out that

psychiatrists were still able to pathologize and treat homosexuality with SOCE in those cases

where an individual was distressed and experienced social impairment as a result of their

same-sex desires under other diagnoses in the DSM, like Sexual Orientation Disturbance

(SOD) in DSM-II (1973) and Ego-Dystonic Homosexuality (EDH) in DSM-III (1973) (p.

35). Though Drescher (2010) argues that with the removal of EDH from DSM-III-R in

1987, “the APA implicitly accepted a normal variant view of homosexuality in a way that had

not been possible 14 years earlier,” it was actually still possible for those who were

adequately distressed and/or impaired with regards to social function as a result of their

same-sex attraction to be pathologized and treated with SOCE until the publication of

DSM-V in 2013 (p. 435).57 Thus, the treatment of trans* kids with GICE is not the same as

the treatment of homosexuals with SOCE because it’s doesn’t need to be—psychiatrists still

had ways available to them to treat individuals with SOCE who wanted it.

The conflation between GICE and SOCE is, I argue, not coincidental, but rather an

artifact of the historical relationship between sex-gender-sexuality with regards to biopower.

In the same way that contemporary articulations of brain organization theory in terms of

hormone-mediated brain gender grows out of and distinguishes itself from the initial scientia

sexualis or hormone-mediated sexuality, GICE grows out of and distinguishes itself from

SOCE. GICE can only appear as GICE once gender is introduced into the field of medical

knowledge/power first constituted through the deployment of sexuality. Prior to this

strategic displacement of the binary to gender, all efforts to produce what we now think of

as “normal” cisgendered lives were SOCE, targeting those whose pathology was read in 57 For example, in DSM-IV-TR (2000), the diagnosis Sexual Disorder Not Otherwise Specified is reserved for “a sexual disturbance that does not meet the criteria for any specific Sexual Disorder and is neither a Sexual Dysfunction nor a Paraphilia,” an example of which is “persistent and marked distress about sexual orientation”(p. 582).

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terms of inversion.

Beyond this historical connection, however, there are additional factors that might

explain the tendency to conflate GICE with SOCE. Clinicians, for example, are unable to

distinguish between the ~20% of kids diagnosed with gender dysphoria whose dysporia will

actually persist until they transition from the ~80% of those whose gender dysphoria will

“desist”—the majority of whom will be gay—and this plays a major role in the way clinicians

think about and approach this issue.58 Indeed, as mentioned above, the inability to

differentiate those trans* kids who will actually transition from those who are merely likely

to be queer is the primary motivation behind the second, “wait and see” approach to care,

and has further led some to argue for the removal of gender identity disorder or gender

dysphoria as a diagnosis in children altogether (Bynes et al., 2012, p. 763). However, for

those clinicians who see transitioning and thus living a trans* or non-cis life as a necessarily

bad outcome to be avoided, treating all children diagnosed with GID with GICE is worth it

if it will lower the rate of persistence in those ~20% of children—particularly given that the

treatment is assumed to be neutral or have no effects on the other ~80%. The exposure of

this latter group to GICE, then, is worth it in service of the production of a greater number

of cisgendered lives overall. It is worth noting, however, that “no long-term follow-up data

have demonstrated that any modality of treatment has a statistically significant effect on later

gender identity” and thus, there is no outcome evidence to recommend any of the three 58 Zucker and Spitzer (2005) also identify this as a reason for the conflation of GICE and SOCE, noting that although there is some evidence “that a minority of GID children develop a heterosexual sexual orientation, without co-occurring GID,” the data to date suggests that of the “range of developmental outcomes for children with GID . . . a homosexual orientation without co-occurring GID is the most common” (p. 33). Further, they acknowledge that homosexuality is a target for some parents who seek out GICE for their children as well as some clinicians who use it, writing, “of course, this is not to say that some clinicians offer treatment for children with GID, in part, to prevent homosexuality or that some parents request treatment, in part, for the same reason. There is clear evidence that this is sometimes the case” (p. 36).

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approaches (Bynes et al., 2012, p. 763).

The controversy over GICE and what constitutes appropriate treatment for children

with GID-C is rumored to have been one of the primary reasons behind the many delays in

the publication of DSM-V (2013). Interestingly, the American Psychiatric Association (APA)

has been unable to come to a consensus on the appropriate or best approach to use when

treating children with GID, in part due to their inability to come to a consensus as to

whether or not being gender variant is a pathology. As part of the development of DSM-V,

the APA convened the Task Force on Treatment of Gender Identity Disorder, which was

charged with performing a “critical review of the literature on the treatment of GID at

different ages, to assess the quality of evidence pertaining to treatment, and to prepare a

report that included an opinion as to whether or not sufficient credible literature exists for

development of treatment recommendations by the APA” (Bynes et al., 2012, p. 759).

Because the APA has never issued official Practice Guidelines for the treatment of

GID outlining the goals of treatment, and thus, the boundaries of ethical care—despite the

recommendation it do so by this very Task Force—its report is the closest we get in terms of

an official statement from the APA regarding the management of GID. In it, the Task Force

explicitly acknowledges the lack of Consensus among psychiatrists regarding the treatment

of GID in children specifically, writing,

The overarching goal of psychotherapeutic treatment for childhood GID is to

optimize the psychological adjustment and well-being of the child. What is viewed as

essential for promoting the well-being of the child, however, differs among

clinicians, as does the selection and prioritization of goals of treatment. In particular,

opinions differ regarding the questions of whether or not minimization of gender

atypical behaviors and prevention of adult transsexualism are acceptable goals of

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therapy (Bynes et al., 2012, p. 763).

Furthermore, the Task Force takes an explicitly agnostic position regarding what constitutes

the core pathology of GID—that is, whether it is the distress and impairment in social

function caused by the perceived discordance of one’s sexed body and gendered self that

makes GID pathological, or whether it is the discordance itself—as well as what constitutes

appropriate, and thus ethical, care for trans* kids. They write,

The Task Force could not reach a consensus regarding the question of whether or

not persistent cross-gender identification sufficient to motivate an individual to seek

sex reassignment, per se, is a form of psychopathology in the absence of clinically

significant distress or impairment due to a self-perceived discrepancy between

anatomical signifiers of sex and gender identity. . . . Similarly, a consensus could not

be reached regarding the legitimacy of particular goals of therapy with children

diagnosed with GID (e.g., prevention of transgenderism or homosexuality) even

when consistent with the religious beliefs or sociocultural values of the parents or

primary caregivers (p. 761).

Thus, ethical medical management of both intersex and trans* children hinges, at least in

part, on the question of whether or not be gender variant and subsequently living a non-

cisgendered life is in fact a pathology, per se. Thus, in the remainder of this chapter, I take up

the task of critically analyzing the pathologization of gender variance or impairment with

regards to cisgendered function, beginning with the dominant biomedical definition of

pathology—Boorse’s BST.

III. A Critical Analysis of Pathology

Recall from Chapter Three Boorse’s definition of pathology as “a type of internal

state which is either an impairment of normal functional ability, i.e. a reduction of one or

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more functional abilities below typical efficiency, or a limitation on functional ability caused

by environmental agents,” where the normal function of a part or a process is defined as “a

statistically typical contribution by it to [one’s] survival and reproduction” (1997, pp.7-8).

This definition of pathology, as well as the notion of function it invokes, has been critiqued

by philosophers of biology, disability scholars, and bioethicists on multiple fronts. First, it is

worth noting Wouters’s argument in his 2003 article “Four Notions of Biological Function”

that there are “at least four different ways in which the term ‘function’ is used in connection

with the study of living organisms” (p. 633) such that the particular sense of function being

invoked in discussion of it often requires clarification. The four senses of function Wouters

elaborates are as follows: 1) function “as (mere) activity,” referring to what an “part, organ,

or substance by itself does or is capable of doing”; 2) function “as biological role,” referring

to “the way in which an item or activity contributes to a complex activity or capacity of an

organism”; 3) function “as biological advantage,” referring to “the advantages to an

organism of a certain item or behavior being present or having a certain character”; and 4)

function “as selected effect,” referring to “the effects for which a certain trait was selected in

the past which explain its current presence in the population” (p. 635). I shall not attempt to

determine exactly which sense of function Boorse is invoking in the BST, at least in part

because I don’t believe he actually invokes a single sense of the term, but rather slips

between the four different usages of function that Wouters identifies. For example, even in

his single sentence definition of normal function Boorse invokes function in both the second

and third senses of the term, by indexing the normality of function in terms of its biological

role—or contribution to a larger system—to its advantages for the organism in terms of

survival and reproduction. Most importantly, however, determining the exact sense of

function that Boorse invokes here is unnecessary for my purposes given the multiple

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problems that Ron Amundson has raised with Boorse’s definition of pathology, specifically

in terms of his definition of normal function.

In his 2000 article “Against Normal Function,” Amundson unintentionally echoes

Foucault in arguing that the concept of biological normality underwriting Boorse’s

biostatistical theory of disease is much like the traditional concept of race insofar as they are

both “invoked to explain certain socially significant differences, such as unemployment and

segregation,” yet have no biological basis and are thus a “biological error”: “the partitioning

of human variation into the normal versus the abnormal has no firmer biological footing

than the partitioning into races. Diversity of function is a fact of biology” (p. 34). Amundson

flags that “as with other quasi-statistical uses of the concept of normality,” on Boorse’s

account “abnormality is usually read as subnormality. Better-than average function is not

usually labeled as abnormal even thought it is statistically atypical” (p. 35). He goes on to

argue that Boorse’s account problematically presumes that “natural species have a certain

statistical characteristic: the variations of function among their members is sufficiently

narrow to justify a dichotomy between normality and abnormality based on the distribution

alone” (p. 35). This “statistical claim about functional diversity within species,” which

Amundson refers to as Boorse’s “functional determinism,” is what allows Boorse (and his

followers) to use terms like “typical contribution to . . .” and “species typical function” as

synonymous with normal function (p. 35). It is also the basis of Amundson’s challenge to

Boorse, for, as he argues, “the facts of functional variation do not support functional

determinism” (p. 35).

Amundson begins by pointing out that although Boorse acknowledges the existence

of some “normal variation” with regards to function, often by pointing to eye colour and

blood type as examples, Boorse provides “no account of how normal variation is

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differentiated from abnormal variation” (2000, p. 35). Amundson argues that for Boorse,

normal variation must mean something like functionally equivalent variation in terms of mode or

“the manner in which a functional outcome or performance is achieved,” and level of

performance, or “the quantitative degree of the functional performance” (p. 36). Thus, green

eyes and brown eyes are normal variants because both see just as well (level of performance)

and in the same way (mode). Thus, for the functional determinist, normal functions are

those that “take place in a uniform mode at a relatively uniform performance level by a

statistically distinctive portion of the members of a species” (p. 36). As a result, there is no

room on Boorse’s account for “functionally distinct but still normal variation” (p. 36).

Amundson, however, argues that not only does functionally distinct yet normal variation

obtain in the world, pointing to examples from physiology and anatomy as evidence of this

point, but further argues such variation should be expected to obtain in the world on the

basis of evolutionary theory and developmental biology.

Amundson notes a considerable amount of tension between the functional

determinism underwriting BST and the large amount of heritable variation within a natural

species both presumed by evolutionary theory and evident within organisms (2000, pp. 36-

38). According to Darwinian evolutionary theory, variation among members of a species can

arise as a result of 1) genetic variation and natural selection or 2) developmental plasticity in

response to the environment. Amundson points out, however, that the common division of

these two sources of variation in terms of nature (the random emergence and selection of

certain genotypes over others) and nurture (trait variation as a result of non-genomic

influences) is something of a misnomer, writing that “developmental plasticity itself evolves

by natural selection, and genomes only determine phenotypic traits within the context of

developmental plasticity” (p. 36). Thus, once again, the nature/culture binary breaks down,

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this time at the level of the genome and developmental trajectories. However, even if we

grant the nature/nurture binary here (as Amundson does for the purpose of his argument),

the “Darwinian view of rich ranges of heritable variation still seems to be at odds with

functional determinism” and “the notion of a determinate species design” (p. 36).

Boorse has issued three arguments or justifications for the functional determinism

posited by the BST. First, Boorse argues that BST is based on typology or types/kinds that

are evident in contemporary physiology and as such, represents a determinism with regards

to species design that is actually seen in nature (Amundson, 2000, p. 37; Boorse, 1997, p.

32). Second, he argues that “evolution typically drives traits to fixation in a species, and the

traits thereafter are kept from varying by normalizing selection” (which, presumably,

explains why we see the kind of physiological evidence appealed to in argument one)

(Amundson, 2000, p. 37; Boorse, 1997, p. 32). Finally, Boorse argues that BST is not

essentialist insofar as it does not involve a claim about the causal powers of the essential

traits (Amundson, 2000, p. 37; Boorse, 1997, p. 38). The most convincing response here

comes from David Hull, who holds that appeals to “‘normality’ have little if any foundation

in biology” and that “no set of traits can be constructed so as to characterize all and only

members of a natural species, that species are rife with variation, and that this is an

unavoidable outcome of Darwinian biology” (Hull, 1986, p. 4; Amundson, 2000, p. 37).

Amundson nonetheless acknowledges that the question of whether or not the variation

posited by evolutionary theory actually obtains in the world is ultimately an empirical one,

writing “evolution is a process that gave rise to tapeworms and elephants. It could surely

give rise to species members as functionally alike as paper clips, and to species members as

functionally diverse as . . . well, as human beings” (p. 38). Further, regarding Boorse’s

second argument about normalizing selection “fixing” traits in a species and thus giving rise

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to the typology he claims we see in contemporary physiology, Amundson amusedly notes

that normalizing selection would be “a very aptly named phenomenon” if it indeed truly

accomplishes what Boorse claims it does (p. 37). Amundson responds simply by stating, “I

am willing to consider it an open empirical question whether evolution results in the kind of

functional uniformity that would license normality definitions. Frankly I doubt it, but

theoretical considerations do not suffice to answer the question” (p. 37). Finally, with

regards to Boorse’s third response regarding the non-essentialism of BST, Amundson

writes,

I agree that the concept of normality invokes no essentialist causal powers, in that

the functional type does not explain biological form. I am concerned, however, that

once the concept is introduced and reified, it is itself [original emphasis] used in causal

explanations of social phenomena. It is used to explain and rationalize the social

disadvantages of people labeled abnormal (p. 37).

If theory is not enough to ground either the BST proponent’s claims regarding the

functional uniformity (and thus, the statistical uniformity) of species or to refute them,

Boorse’s first claim—that typology or normality with regards to species design obtains in the

world and is thus rooted in contemporary physiology, not in evolutionary theory—becomes

the bedrock upon which the theory stands. Further, the question of whether this is indeed

true becomes a particularly pressing one when considered in light of not only the

objectifying and subjectifying effects of pathologization, but also the social, political, and

economic disadvantages that accrue to those labeled abnormal through the reification of the

concepts of biological normality and functional uniformity, as Amundson points out. The

burden of proof is thus on those towing the BST line that species, and in this case humans,

exhibit the level of functional uniformity and thus statistical uniformity required to equate

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normal function with species-typical function. Unfortunately for Boorse and his followers,

Amundson points to multiple examples which give us good reason to believe that not only

might contemporary physiology be nowhere near as typological as the functional determinist

holds, but further, that whatever typology contemporary physiology does posit “might well

be wrong” (2000, p. 37). Quite apart from the lack of empirical support for functional

uniformity, Amundson reviews two features of the biological development of organisms —

developmental plasticity and functional integration — in order to argue that the functional

determinism posited by the BST is simply unnecessary, whether it actually obtains in the

world or not.

Functional determinism, notes Amundson, is understood as following from the goal-

directedness of life processes, which Boorse understands as cashing out in the form of species-

design (Amundson, 2000, p. 38; Boorse, 1997, p. 9). Amundson agrees that life is goal-

directed, but argues that functional determinism “does not follow from life’s goal-

directedness,” contrasting William Paley’s pre-evolutionary concept of teleology with that of

Kant’s in order to illustrate the difference between his understanding of goal-directedness

with that of Boorse. He identifies Boorse’s position with that of Paley, according to which

“body parts of an organism are specifically designed to adapt the organism to its

environment, and each member of a species is functionally identical” (Amundson, 2000, p.

38). Kant’s concept of biological directedness, on the other hand, focused “on the processes

of embryological, ontogenetic development,” which were understood as “directed towards

the development of a functioning adult,” and that took these processes to be “remarkably

plastic and resilient to perturbation” (p. 38). As Amundson writes,“[t]he goal-directedness

seen in developmental plasticity renders the concept of species design [emphasis in original]

highly suspect. Development yields adults that function, but not adults that function identically

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[emphases in original]. Functional diversity is a product of developmental plasticity” (pp. 38-

39).

Amundson further points out that during the processes of ontogeny that “bring

about the functional integration of the organism,” the body parts and systems of every

organism adjust to each other as they develop, whether or not the organism “is destined to

be statistically typical or atypical of its species” (2000, p. 39). Amundson points to the

development of the eye to illustrate this point:

The lens of the eye is not determined to develop in the location it does by its

position on some genetic blueprint. Rather, the already-formed optic vesicle induces

the ectoderm that overlays it to differentiate into the lens (after an earlier and more

complex series of tissue interactions). If some trauma happened to relocate an optic

vesicle to an unusual position on the head, lens induction would still proceed and

result in a functioning eye (p. 39).

Altogether, this leaves Amundson to conclude that although the “facts of developmental

biology do not conclusively refute functional determinism,” they nonetheless seem to render

it unnecessary. He writes,

A non-typical but viable phenotype is not broken by its failure to comply with some

imagined blueprint for its species. It will function anyhow, in spite of its atypicality.

It will owe its function to the same developmental processes of integration and

adaptation responsible for the function of typical organisms of its species (p. 39).

Amundson reviews five different examples of functional variation in different

humans and other animals in order to prove the point that not only is tremendous functional

diversity possible, but that “the kind of functional diversity that follows from developmental

plasticity is also an ordinary part of everyday life” (p. 39). The examples vary as to the kind

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of counterfactual they pose to BST. For example, Amundson’s example of Slipjer’s goat

highlights the capacity for an organism to accomplish a function (such as walking) via an

atypical mode as a result of developmental plasticity and functional integration (p. 39). The

goat was highly atypical relative to the statistical norm for her species in terms of both

skeletal and muscular anatomy, having an S-shaped spine, no forelegs, as well as “an

atypically broad neck, many atypically shaped bones and atypically positioned muscles” (p.

39). Nonetheless, the goat learned to walk bipedally on its hind legs, such that “by the

species design criterion of goal-directedness, Slipjer’s goat was a notable failure,” however,

“by the developmental criterion it was a roaring success” (p. 40). Biological “types,” writes

Amundson,

are unified not by the functional identity of their eventual phenotypes, or the

common blueprint from which they were built. Rather they are unified by their

shared developmental processes. These processes generate phenotypes that are

functionally diverse, both between and within species (p. 40).

Additional examples, such as humans’ ability to adapt to the surgical reversal of nerve

attachments to muscles better than primates, highlight other aspects or expressions of

functional diversity—in this case, the greater capacities some species have for developmental

plasticity compared to others (p. 41). One of Amundson’s examples, however, is particularly

useful for the purposes of my discussion here, given the way it underscores our species’

extreme capacities for neuroplasticity and neurointegration, as well as functional variation.

The case, first reported by Roger Lewin in his 1980 article “Is Your Brain Really Necessary?”

is that of a “functionally normal” University student in the UK with an IQ of 126 and

“virtually no brain” (Amundson, 2000, p. 40; Lewin, 1980). The student had a severe form of

hydrocephaly, in which an excess of cerebrospinal fluid can lead to the “enlargement of the

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cranium and/or reduction in the volume of brain tissue” (Amundson, 2000, p. 40).

Amundson notes that in its most severe form, “ventricle expansion fills 95% of the cranium”

leaving only 5% for brain tissue, and while many with this severe form of hydrocephaly

experience profound mental and physical disabilities, about half have IQs above 100

(Amundson, 2000, p. 40; Lewin, 1980, p. 1232). Furthermore, there are those like the student

Lewin discusses with hydrocephaly who are “subclinical,” meaning they exhibit normal

cognitive and physical function and tend to have average or only slightly above average

craniums compared to those without hydrocephaly. As Amundson writes, the student was

only tested “because his professor was familiar with a colleague’s ongoing study of

subclinical hydrocephaly, and the student had a large head” (p. 40). Though the student

turned out to be “functionally indistinguishable from his colleagues,” he was determined to

have “no more than 10% [emphasis added] of the average person’s brain tissue” (p. 40).

Amundson points out that “accounts of similar phenomena are common in medical

literature” (p. 40), using the case as an example of an organism’s achieving statistically

average levels of performance via a statistically atypical mode of function, by way of their

capacity for neuroplasticity and neurointegration. This, along with his other examples of

functional variation, lead Amundson to conclude that “the goal-directed processes of

biological development are not finely tuned towards the production of functionally identical

species members. Their inherent flexibility can be expected to generate a rich diversity of

functional modes” (p. 43).

Amundson thus critiques the BST in terms of the unnecessary functional

determinism it posits. Not only does the capacity for developmental plasticity and functional

integration equip us with the ability to achieve equivalent or at times even superior levels of

performance via a variety of functional modes, but further, not all functions are equal in

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terms of their importance to the organism’s viability. For example, digestion, which can be

accomplished via a variety of modes (such as orally, via a nasogastric tube, or via a gastric

tube for humans), is a necessary function for human viability, whereas other functions

Amundson mentions, such as walking, are not. Furthermore, as Amundson points out,

humans are “distinctive among species in their extensive use of tools and in the degree to

which they modify their environment” (p. 45). “Tool use and environmental design” is

statistically typical among humans in the sense that all humans engage in it, while such

engagement “changes the modes and levels of human function available” (as the car changes

locomotion) (p. 45). Amundson argues that “from a broad biological perspective these

changes can be seen as an extension of the principle of functional integration,” opening up

even greater modes of functional variation beyond those constituted through the body alone

(p. 45). This leads Amundson to the following conclusion, in which one can hear echoes of

Tremain:

The present unequal distribution of opportunities among people with varying

biological traits can only appear to be fixed by nature if we ignore the fact that all

[emphasis in original] human beings use tools and live in built environments, and

that the design of tools and environments is an outcome of human choices. Given

the appropriate technology and environment, blind people can read and paralyzed

people can be mobile. The disadvantage that attaches to blindness and paralysis

derives not from the atypicality of one’s biology, but from the absence of appropriate

tools and environments (p. 47).

Further, given that our focus in pathologization is on the mode of function rather

than the level achieved—for example, in the way that we continue to identify the person in a

wheelchair as impaired even if they can do the 100m dash faster than a person without

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one—Amundson argues that pathologization is often about privileging a particular mode of

function over others. This is why, he argues, we sometimes force individuals to pass as able-

bodied even when they are not and often at the expense of the level of function, as in the

case of therapeutic efforts which aim at making autistic children appear normal by decreasing

the amount of self-stimulation or “stimming” they engage in, even if it results in a lower level

of function (p. 50).

Equipped with Amundson’s critical insights into the dominant biomedical account of

pathology, I now turn to examine critically the pathologization of intersex conditions in

terms of the three normal functions of physical sex that I laid out in the previous chapter.

For each one, I show that attempting to ground the pathology of intersex conditions in

terms of that function fails to take into account the wide range of functional diversity both

seen and expected in nature as a result of developmental plasticity and functional integration.

Furthermore, it also constitutes the arbitrary privileging of a particular, fashionable mode of

function over others, often at the expense of functional performance level.

IV. The Pathology of DSDs As mentioned in chapter three, one’s capacity for reproductive function can be

hindered in multiple different ways, most obviously with regards to their gonadal ability to

produce gametes or their physical ability to bring their gametes into contact with another’s

gametes to produce an embryo. Sterility, or the inability to reproduce, is a pathology from an

evolutionary standpoint because, even though it does not comprise an organism’s viability, it

does compromise their ability to pass on their genes, and thus results in a 100% loss of

Darwinian Fitness, a technical term referring to “product of fertility and probability of

survival” (Roughgarden, 2009, p. 106). Arguments for the pathologization of intersex

conditions on the basis of sterility, however, will ultimately apply to a very small proportion

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of that population, for while it is true that some intersex conditions result in the complete

loss of fertility (rather than merely decreased fertility), most notably CAIS, this is only the

case for the minority of conditions. In fact, the majority of the sterility experienced by

intersex patients is iatrogenic or medically-induced—the result of gonadectomies performed

as part of the surgical and hormonal normalization process. Furthermore, it is worth noting

that if it is true that advances in molecular genetic knowledge of sex development and of

intersex conditions will result in an increase in the number of people who count as having

one (and who remain subclinical), it is likely the case that only a minority of those with

intersex conditions will have the fertility issues this argument presumes.

Evolutionary definitions of pathology or defect, however, are made at the level of

the population or species, not at the level of the individual. As biologist Joan Roughgarden

(2009) writes in Evolution’s Rainbow: Diversity, Gender and Sexuality in Nature and People, in order

for a genetic inherited trait to be a genetic defect, it must meet two specific criteria: 1) “the

trait must be extremely rare” as a result of being continuously opposed by natural selection

and 2) the trait must be deleterious or non-advantageous under every condition (not merely

the current conditions) (p. 281). The frequency of a trait in a population, known as its

mutation-selection equilibrium, is, as Roughgarden writes, “set by a balance between two

rates: the rate of formation by mutation and the rate of elimination by natural selection” (p.

281). Thus those traits that are lethal (and similarly result in a 100% loss of Darwinian

Fitness) occur only as frequently as the mutation rate itself (1/1,000,000), because they are

necessarily always selected against (Roughgarden, 2009, pp. 281-282). For non-lethal traits,

the frequency of the trait in the population increases as the effect of the trait on Darwinian

Fitness decreases—for example, a trait that results in a 10% loss in Darwinian Fitness will

have a frequency of 1/100,000 while one resulting in a 5% loss in Darwinian Fitness will

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have a frequency of 1/50,000, etc. (p. 282). Roughgarden herself takes this latter frequency,

1/50,000 as “threshold rarity at which a trait can be considered a defect,” writing,

Even if a trait isn’t particularly harmful, and a 5 percent loss of fitness wouldn’t be all

that easy to detect, this degree of disadvantage, if sustained through all generations

everywhere, would eventually lead to the trait becoming as rare as 1 in 50,000 (p.

282).

Roughgarden argues that “regardless of medical opinion,” if a trait is more frequent in the

population than this, it cannot be a genetic defect:

If the trait is, say, ten times more common than the cutoff value (1 in 50,000) and

has been traditionally considered a “disease,” then either the trait’s overall

disadvantage has been overestimated to begin with, or else the trait has some

possibly unknown advantages in addition to the known disadvantages (pp. 282-283).

We can see a breakdown between evolutionary scale definitions of pathology at the

level of the population and medical definitions of pathology with regards to the individual in

the case of sterility, for not only do many individuals find being sterile to be personally

advantageous, but further, many use medical interventions to render themselves both

temporarily and permanently unable to reproduce. Indeed, there are those for whom finding

out they are sterile comes as a relief rather than as the discovery of a pathology or defect.

Furthermore, as Roughgarden points out, the majority of intersex conditions are too

frequent and/or inadequately disadvantageous to meet the criteria for genetic defect.

In a section titled “Is Intersexuality a Genetic Defect?” Roughgarden writes that only

three intersex conditions could be genetic defects according to evolutionary criteria: CAIS,

the Salt-Wasting form of CAH (SW-CAH), and hermaphroditism (defined as the possession

of ovarian and testicular tissue, regardless of phenotype) (2009, pp. 288-293).

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Hermaphroditism and Cloacal Exstrophy are the only intersex conditions that are rare

enough to arguably meet the frequency threshold for defect, with frequencies of 1/85,000

and 1/250,000 respectively (CAIS has a general frequency of 1/13,000 and Classic CAH

frequency of 1/13,000, two-thirds of whom will have the salt-wasting phenotype)

(Roughgarden, 2004, p. 290).59 Roughgarden identifies CAIS and SW-CAH as pathological

because in the case of the former, though “not necessarily painful,” it is nonetheless,

“deleterious to fertility,” while in the case of the latter, SW-CAH is lethal without treatment

(this is also true of those with Cloacal Exstrophy) (pp. 290-291). Regarding those with

hermaphroditism, however, she is more agnostic:

Medical consensus unquestioningly stigmatizes hermaphroditism as a genetic defect

because of cancer risks and lower fertility. . . . Still, one must recall that in some

mammals ovotestes are the norm. . . . Hermaphroditic people should not be

pathologized as violating some law of nature. They possess a trait that’s rare in our

species but common in others (p. 293).

Roughgarden thus concludes that “the most common forms of intersexuality”

including hypospadias, non-salt-wasting versions of CAH, PAIS, and aneuploidies, are not

defects, but rather “differ only cosmetically from nonintersexes” (p. 293). This echoes

Amundson’s claim regarding the role of pathologization as privileging particular modes of

function—which he calls “fashionable”—over other, unfashionable modes. That is,

Roughgarden argues that for the majority of cases, the pathologization of intersex conditions

is not the function of a natural, biologically-based distinction between the normal and the

pathological, but rather of a cosmetic distinction made between two modes of gendered

function: via typically-sexed bodies and via atypically-sexed bodies. Further, evidence for the 59 For a summary of the frequencies of the most common intersex conditions, see Appendix A.

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privileging of a particular mode over level of functional performance, as well as a failure to

take into account functional integration, can be seen in the practice of sterilizing

gonadectomies. Advances in reproductive technology have firmly separated reproduction

from conjugal ability such that it is a mistake to conflate the ability to combine one’s gametes

with another’s with the ability to physically engage in reproductive intercourse. Assigning an

XY infant with severe hypospadias female due to the limitations in phalloplasty and

removing their otherwise normal gonads as part of their surgical and hormonal feminization

sacrifices whatever level of reproductive function might have been available to them through

the use of reproductive technologies simply because it could not be achieved via a particular

mode (that is, penetrative intercourse). Thus we foreclose from intersex infants whatever

level of reproductive function that reproductive technologies might have made possible due

to our surgical inability to construct bodies that can reproduce in the right way, that is, bodies

capable of reproducing via hetero-coital function.

Once you separate hetero-coital function from reproductive function, attempting to

ground the pathologization of intersex conditions on the basis of the former becomes even

more suspect than trying to ground it on the basis of the latter. Pathologizing and

subsequently surgically and hormonally normalizing an infant based on their inability to

physically engage in penile-vaginal intercourse not only problematically assumes that infant’s

future preferences will be to engage in penile-vaginal intercourse, but that they will so value

the capacity to engage in it, that they would assume the risks associated with surgery in order

to obtain it (such as loss of genital sensation and compromised ability to orgasm). Indeed,

given the costs associated with surgical normalization, its performance for the sake of

hetero-coital function seems to epitomize the sacrificing of level of function performance

for mode of functional performance (unless you take sexual functional performance to entail

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mere penetration in itself). Moreover, it also assumes that it is ethical to surgically intervene

upon those unable to consent in order to secure their capacity to engage in hetero-coital

function, a position that cannot be defended, even if individuals themselves view their

inability to do so as a pathology they would like fixed. One could—for example—imagine a

case where a comatose adult patient without ID was admitted to a hospital and subsequently

found to have ambiguous genitalia. Even if that individual longed for genital normalizing

surgery in their pre-comatose state, we would nonetheless consider it unethical for

physicians to perform this kind of medically unnecessary surgery on them in this situation

without their consent. It is not clear to me that surgery to secure the future Hetero-Coital

Function of an intersex infant without their consent is any different than this scenario, or

any less unethical.

This brings me, finally, to cisgendered function, the primary way through which the

pathology of intersex conditions is constituted. As I argued in Chapter Three, it is in the

service of producing a cisgendered life that intersex infants are surgically and hormonally

masculinized or feminized on the basis of two assumptions: 1) that a body which is “sex-

typical” in both appearance as well as hormonally is necessary to one’s psychosexual

development as unambiguously cisgendered, and 2) a necessary component of one’s

development as such is being treated in an unambiguously gendered way by others—that is,

as a boy or a girl—which requires sex-typical genitals. Thus the development of gender is

posited as both natural and social, the product of the sexed body (likely via hormones) and

of social interaction. As I (and many others) have noted, there is no empirical evidence to

support either of these two assumptions. Furthermore, empirical investigation into either of

these two claims itself presumes that cisgendered life is itself normal rather than

pathological, a biopolitical good to be studied in order to be (re)produced.

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Additionally, even if we do grant that a cisgendered life is in fact “normal,” intersex

management practices seem unjustifiably to entail the privileging of a particular mode of

function over others, often over the level of functional performance. Imagine we were to

revise our definitions of the normal male or female sexed body in terms of what is normal to

expect with regards to the model of bipolar sex that we have been working with since

Money, rather than what is statistically normal or typical. On such an account, statistically atypical

bodies are normal insofar as we expect them to exist/appear—their statistical atypicality does

not render them abnormal. Consider, for example, a normal distribution curve (identical to

the one Boorse uses when formulating his definition of the normal and the pathological)

representing the heights of members of a population, ranging from 4 feet 6 inches, to 6 feet

8 inches (see Figure 5).

Figure 5. Normal Distribution of Heights in Hypothetical Population A

Note. From Paolo Zinatelli (2015). While it would be statistically atypical to be 4 feet 7 inches tall in this population, it would

nonetheless be normal insofar as we would expect some (if few) members of the population

to be that height. Mere statistical atypicality of a cosmetic feature, such as height, is not

enough to confer abnormality or pathology. Similarly, our bipolar model of sex assumes a

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bimodal distribution of sex characteristics upon which it is expected for certain sexed bodies

to be statistically atypical. Thus, while ambiguously sexed bodies may not be statistically

normal, they are nonetheless a necessary component of statistically valid distributions and

thus it is normal to expect their appearance. Were we to identify such statistically atypical

bodies as normal with regards to the bimodal distribution of male or female physical sex

(wherever we draw the boundary between them), those who developed in a cisgendered

fashion would still be performing cisgendered function, simply via an atypical or

unfashionable mode. The fact that we commence with medically unnecessary normalization

rather than take on more representative definitions of the sexed body privileges a particular

mode of function over level of performance (assuming one takes the ability to orgasm to be

a part of cisgendered life).60

Those engaged in intersex management not only assume all this, but also fail to

recognize their problematic or questionable assumptions. This, I argue, is why despite years

of intersex activism and feminist critique, Zucker (1999) is the only clinician explicitly to

knowledge or attempt to address the question of intersex conditions’ pathologization and

that only very superficially. Cisgendered life is, to all medical experts, obviously normal, and

having a sex-typical body (and particularly genitals) is necessary to its development. Thus,

those without sex-typical bodies are obviously pathological—their bodies fail to function in

accordance with their cisgendered design. As a result, there is no consideration of the

60 While medical and popular opinion has shifted such that women’s ability to orgasm has come to take on increasing importance with regards to what we think of as “normal womanhood” or “normal female sexuality,” this is not consistently the case (Tuana, 2004). has not always been the case. Indeed, medical practices performed under the OGR treatment model have often been used as evidence of the sexist and heteronormative subordination of women’s capacity for arousal and orgasm to concerns about an aesthetically appropriate vulva or a vagina of adequate depth for penetration (Kessler, 1998). Further, the continued use medically unnecessary clitorial reduction surgeries indicates that this subordination of women’s sexuality to men’s sexuality persists under DSD.

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identification of cisgendered life as normal and of gender variant life as pathological in the

clinical literature on intersex for me to critically examine. Fortunately, however, trans*

critiques of pathologization have been so forceful that psychiatrists have been very explicit

about their justifications for retaining Gender Identity Disorder as a diagnosis, even in the

absence of consensus regarding its status as a pathology per se. Indeed, not only does the

retention of Gender Identity Disorder in DSM-V as Gender Dysphoria remain one of the

more controversial aspects of the generally controversial “Bible” of psychiatric disorders, but

further, the nosological shift itself speaks to the differential success that the intersex and

trans* activist communities have had in terms of getting clinicians to respond to their

concerns about pathologization. Thus, I now turn to examine the pathologization of gender

variance by the APA through Gender Identity Disorder and in particular, the justifications

given for its continued pathologization under DSM-V through the diagnosis of Gender

Dysphoria.

V. Gender Variance and Mental Disorders Gender Identity Disorder (GID) was first introduced in DSM-III (1980), with the

subtypes of “Transsexualism,” “GID of Childhood,” and “Atypical GID” within the group

of Psychosexual Disorders. Prior to the 1980s, individuals who exhibited gender variance

were pathologized or “treated” via other diagnoses in the DSM—generally those in the

Sexual Deviations supracategory such as Homosexuality or Transvestism (Meyer-Bahlburg,

2010, p. 462). As Meyer-Bahlburg writes (2010), sex reassignment first became “a salient

issue” in North America following the surgical and hormonal transition of George/Christine

Jorgenson in 1952, and by the mid-1960s, the first transsexual clinic was opened at Johns

Hopkins Hospital (though it would close in 1979 as a result of “ideological backlash”) (p.

462).

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Between 1980 and 2013, GID has undergone multiple redefinitions within the DSM.

In DSM-III-R (1987), GID was separated from the Psychosexual Disorders and placed

under Disorders Usually First Evident in Infancy, Childhood, or Adolescence with the new

subcategories of “Transsexualism,” “GID of Childhood,” “GID of Adolescence and

Adulthood, Nontranssexual Type” (GIDAANT) and “GID Not Otherwise Specified”

(GID-NOS) (Meyer-Bahlburg, 2010; Drescher, 2012; APA, 1987). In DSM-IV (1994) and

DSM-IV-TR (2000), the supraordinate category Sexual and Gender Identity Disorders was

introduced, including the sub-categories of “GID in Children” (GID-C) and “GID in

adolescents and adults” and “GID-NOS.”61 Meyer-Bahlburg (2010) writes that despite its

many reformulations, the “core construct of GID” has been the same across all versions,

and is

a combination of identification with the other gender and a sense of

inappropriateness, if not rejection, of one’s assignment to the natal gender, with the

key specifiers of age (in terms of some age-specific criteria), gender (including some

gender-specific criteria for childhood), and sexual orientation (for adolescents and

adults) (p. 462).

Notably, the second specifier here—gender—coheres with my definition of cisgendered

function, in its reference to gender role or behavior as well as sex-specific, non-sexual desires

or preferences, such as “a strong preference for the toys, games, or activities stereotypically

used or engaged in by the other gender”(Meyer-Bahlburg, 2010, pp. 462-463; APA, 2013, p.

452). Psychiatrist and member of the Work Group tasked with revising the section on

Gender Identity Disorder for DSM-V, Jack Drescher writes that the introduction of

61 Other diagnoses within the Sexual and Gender Identity Disorders category include Orgasmic Disorders, Sexual Arousal Disorders, Paraphilias and Sexual Desire Disorders (APA, 2000).

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transsexualism in DSM-III was “based on the research and clinical contributions” of four

individuals: Money (1921-2006), psychiatrist Robert Stoller (1924-1991), physician Harry

Benjamin (1924-1991), and psychiatrist Richard Green (1936-) (Drescher, 2010, pp. 437-

439). The history of the formal pathologization of gender variance and its management via

networks of knowledge/power in the West is a direct result of the thinking and practice of

these four physicians and close friends.

Unsurprisingly, transsexuality’s introduction into the DSM begins with Money’s

work on intersex patients, his subsequent production of gender, and his belief that “a

person’s gender identity was fixed by three years of age,” such that he considered changing

the gender identity of anyone older “difficult, if not impossible” (Drescher, 2010, p. 438). As

Drescher writes,

Pessimism about changing an adult’s gender identity left only one therapeutic

alternative to improve the affected individual’s well-being: sex reassignment. In the

mid-1960s, in the wake of Money’s theoretical work and his clinical and research

findings, Johns Hopkins opened the first university-affiliated, multidisciplinary

gender clinic offering sex reassignment to transsexuals seeking treatment. More than

40 academic centers in the U.S. would later open gender clinics as well (p. 438).

Stoller, whom Drescher characterizes as having been “a preeminent member of both

the American psychiatric and psychoanalytic establishments of his time” (Drescher, 2010, p.

438), was also working on and theorizing about gender, and like Money, on the basis of

trans* and intersex patients. Stoller, Drescher notes, was the first to tease gender identity out

of Money’s concept of gender-role, giving rise to their current mode of existence as two

separate, though intimately related entities. Stoller was not an essentialist about gender, but

rather believed that some cases of adult transsexualism were caused by “childhood family

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dynamics,” (Drescher, 2010, p. 439). The physician to whom he sent many of his patients for

surgical and hormonal treatment, however, was an essentialist about gender. Harry Benjamin

was an early adopter of brain organization theory, and held that MTF transsexuals were likely

the result of “a biological disorder” wherein the brain “was probably ‘feminized’ in utero”

(Drescher, 2010, p. 438). Subsequently, Benjamin had “little regard for his era’s psychiatrists

and psychologists” and “believed psychotherapeutic attempts to change gender identity were

‘futile’” (Drescher, 2010, p. 438). His work with transsexuals was, in fact, “an outgrowth of

his interests in the developing fields of endocrinology, gerontology, and sexology in the

1920s and 1930s. Benjamin was among the first physicians to experiment with hormonal and

surgical treatments for aging—he eventually pioneered the treatment of gender dysphoric

individuals using sex hormones” (Drescher, 2010, p. 438).

A German-born physician who received his medical degree in Berlin in 1912,

Benjamin was described by a colleague as having “diagnosed, treated, and befriended at least

a thousand of the ten thousand Americans known to be transsexual” by the time he turned

60 (Person, 2008, p. 260). In the process, writes Person, Benjamin established himself as

“not only . . . the discoverer but also as the patron saint of transsexuals’’ (Person, 2008, p.

260). As Drescher points out, Benjamin accomplished this work “in a private practice setting

without either university or academic support” (2010, p. 438). The group formed in 1979 to

develop the first Standards of Care (SOC) for treating trans* individuals was named the

Harry Benjamin International Gender Dysphoria Association (HBIG- DA) in recognition of

Benjamin’s “early advocacy for the medical treatment of transsexualism,” though in 2009,

this organization renamed itself the World Professional Association for Transgender Health

(WPATH) (Drescher, 2010, p. 438). In 2011, WPATH published the 7th Version of its SOC

for the Health of Transsexual, Transgender, and Gender-Nonconforming People (a full two

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years prior to the publication of DSM-V) which, given the APA’s failure to issue formal

Practice Guidelines for treating these patients, remains the international SOC.62

A medical student at Johns Hopkins, Richard Green studied “cross-gender behavior

in children under the supervision of his mentor John Money,” before moving on to do his

psychiatric training at UCLA under Stoller, as well as to develop a “close relationship” with

Benjamin (Drescher, 2010, p. 439). Green co-edited or co-authored multiple foundational

texts in on trans* patients including Transsexualism and Sex Reassignment (Green & Money,

1969), which Drescher refers to as a “groundbreaking, multidisciplinary treatment textbook,”

as well as the book The ‘‘Sissy Boy Syndrome’’ and the Development of Homosexuality (Green, 1987)

in which he found that 75% of the 66 gender atypical boys he studied grew up to be gay men

(Drescher, 2010, p. 439).

Drescher writes that in addition to being “among the most prominent of

psychiatrists who supported the APA decision to remove homosexuality from the DSM-II,”

Stoller and Green were also on the subcommittee that recommended introducing

transsexualism into DSM-III. Two reasons are generally given for the introduction of

transsexualism or GID in both adults and children in DSM-III: 1) By 1980, there was

enough clinical literature about and clinical experience of those with gender identity disorder

to “support its uniqueness as a clinical entity,” and 2) Unlike previous versions which had

relied quite heavily on “expert consensus,” DSM-III “placed much greater emphasis on the

establishment of explicit diagnostic criteria . . . which would increase the likelihood of 62 The American Medical Association formally endorsed the WPATH’s SOC with Resolution 122 in July 2008 (AMA, 2008), as has the Endocrine Society (Hembree et al., 2009). The APA has yet to do so. Importantly, the 7th version of WPATH’s SOC (2011) explicitly condemns the use of GICE, stating that “[t]reatment aimed at trying to change a person’s gender identity and lived gender expression to become more congruent with sex assigned at birth” is “no longer considered ethical” (p. 32). However, because the APA has never formally endorsed the WPATH SOC, psychiatrists need not abide by this treatment model with regards to the administration (or non-adminstration) of GICE.

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establishing a putative disorder’s reliability and validity” (Zucker & Spitzer, 2005, p. 36). In

fact, it was with DSM-III that the APA first adopted its current account of and system of

classification for mental disorders, based on German psychiatrist Emil Kraepelin’s system of

classifying mental illnesses in the manner of syndromes—that is, in terms of common

patterns of symptoms over time (Murphy, 2006, pp. 30-31). Under this neo-Kraepelinian

system, mental disorders are clusters of signs and symptoms that regularly co-occur, but are

not defined or classified in terms of the physical processes on which they undoubtedly rely,

such that psychiatric pathologies are not bound to any particular etiology or causality, with

the threshold or boundaries for mental disorder drawn in terms of distress and impairment

of social function (Murphy, 2006, p. 211). Indeed, in DSM-V, mental disorder is defined as

a syndrome characterized by clinically significant disturbance in an individual’s

cognition, emotion regulation, or behavior that reflects a dysfunction in the

psychological, biological, or developmental processes underlying mental functioning.

Mental disorders are usually associated with significant distress or disability in social,

occupational, or other important activities. An expectable or culturally approved

response to a common stressor or loss, such as the death of a loved one, is not a

mental disorder. Socially deviant behavior (e.g., political, religious, or sexual) and

conflicts that are primarily between the individual and society are not mental

disorders unless the deviance or conflict results from a dysfunction in the individual,

as described above (APA, 2013a, p. 20).

Thus, we get the current format of the DSM that lays out the diagnostic criteria for a mental

disorder in terms of regularly co-occuring symptoms and clinically significant distress or

impairment in social function. There are two very interesting and important features of this

account of mental disorder first adopted by the APA in DSM-III: 1) it emerged out of

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debates over the removal of homosexuality from DSM-II and 2) it remains agnostic with

regards to causality, defining mental disorder solely in terms of distress and social

impairment as a result of “clinically significant disturbance in an individual’s cognition,

emotion regulation, or behavior” (excluding those clinically significant disturbances which

are culturally approved or merely socially deviant).

In his detailed review of the diagnostic histories of Homosexuality and Gender

Identity Disorders, Drescher writes that debates over Homosexuality’s place in the DSM

forced those working on the issue for the APA to reformulate their definition of mental

disorder and stresses that the removal of the diagnosis from DSM-II was merely a

concession that homosexuality did not fit the criteria for a mental disorder per se according

to this new definition, rather than the organization’s acceptance of it as a normal human

variant. Homosexuality was included in the first edition of the DSM (1952) where it was

classified as a “sociopathic personality disturbance,” though it would re-classified as a

“sexual deviation” in DSM-II (1968) (Drescher, 2010, p. 434). Drescher argues that

etiological theories of homosexuality can be generally divided into three types; 1) Theories of

Normal Variation that posit homosexuality to be (as one might imagine) a normal and likely

natural variation in human sexual behavior; 2) Theories of Pathology that “hold that some

internal defect or external pathogenic agent causes homosexuality and that such effects can

occur pre- or post-natally (intrauterine hormonal exposure, excessive mothering, inadequate

or hostile fathering, sexual abuse)”; and 3) Theories of Immaturity that hold homosexuality

to be a normal step in the development of adult heterosexuality and see the homosexual as

“arrested” in that stage of development (pp. 431-432).

By the mid-1950s, Theories of Pathology dominated the psychiatric community and

the issue was more about being clear about the type of pathology homosexuality was—i.e.

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was it a sociopathy or an anxiety disorder or a sexual deviance—and thus how to best “cure”

it. Drescher argues that because American psychiatry was so heavily influenced by

“psychoanalytic ego psychology,” psychiatrists largely ignored the growing body of sex

research by individuals like Kinsey and Hooker that indicated that not only was

homosexuality more common than psychiatry maintained, but further, that homosexuals

failed to suffer any more psychological disturbances than heterosexuals (Drescher, 2010, pp.

433-434). However, Drescher writes that “by 1970 the scientific research arguing for a non-

pathological view of homosexuality was dramatically brought to the attention of the APA”

most notably by gay activists who disrupted both the 1970 and 1971 annual meetings of the

APA. Gay activism alone did not lead to the removal of Homosexuality from the DSM,

however. Many factors both inside and outside the APA played a role, including a growing

anti-psychiatry movement, a “generational changing of the guard within APA comprised of

younger leaders urging the organization to greater social consciousness” (p. 434) and

presentations by gay activists and a disguised gay psychiatrist at the 1972 annual meeting.

A subcommittee of the APA’s Nomenclature Committee tasked with reviewing

Homosexuality was forced to review the larger account of mental disorder and redefine it.

The subcommittee, writes its Chair, psychiatrist Robert Spitzer

reviewed the characteristics of the various mental disorders and concluded that, with

the exception of homosexuality and perhaps some of the other “sexual deviations,”

they all regularly caused subjective distress or were associated with generalized

impairment in social effectiveness of functioning (p. 211).

With this novel definition of mental disorder in terms of impairment and distress in hand,

the Nomenclature Committee concluded that homosexuality was not a mental disorder per

se and in December 1973, the APA’s Board of Trustees (BOT) voted to remove

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homosexuality from the DSM (Drescher, 2010, p. 434). Drescher notes, however, that this

did not settle the issue. Rather, as a result of a petition by “psychiatrists from the

psychoanalytic community” who objected to the BOT’s decision, a referendum of the APA’s

membership was held on the matter. Nonetheless, the BOT’s decision was upheld by a 58%

majority of the voting members, and Homosexuality was removed from the DSM (p. 434).

Following its removal from the DSM, the APA issued a formal statement endorsing

civil rights protections for gay people (APA, 1973). Nonetheless, as Spitzer writes, this was

not an endorsement of a normal variant position, as can be seen in this statement from the

APA’s 1973 position paper announcing the diagnosis’ removal:

If homosexuality per se does not meet the criteria for a psychiatric disorder, what is

it? Descriptively, it is one form of sexual behaviour. Our profession need not agree

on its origin, significance, and value for human happiness when we acknowledge that

by itself it does not meet the requirements for a psychiatric disorder. Similarly, by no

longer listing it as a psychiatric disorder we are not saying that it “normal” or as

valuable as heterosexuality. . . . What will be the effect of carrying out such a

proposal? No doubt, homosexual activist groups will claim that psychiatry has at last

recognized that homosexuality is as “normal” as heterosexuality. They will be wrong.

In removing homosexuality per se from the nomenclature we are only recognizing

that by itself homosexuality does not meet the criteria for being considered a

psychiatric disorder. We will in no way be aligning ourselves with any particular

viewpoint regarding the etiology or desireability of homosexual behavior (APA,

1973, pp. 2-3).

The definition of distress and social impairment created to deal with

homosexuality was then enshrined in DSM-III at the same time that transsexuality

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entered it. Further, this is why the pathologization and management of individuals with

SOCE since the DSM-III has hinged whether or not an individual’s same-sex desire

caused them distress and social impairment (i.e. in terms of ego-dystonic homosexuality

or sexual orientation disturbance). Interestingly, while the APA points out here that they

need not agree on homosexuality’s origin in order to determine that it is not a

pathology, they actually need not agree about this to determine it is a pathology either.

Importantly, though the account of mental disorder established with DSM-III

assumes that the individual’s symptoms in some way reflect “a dysfunction in the

psychological, biological, or developmental processes underlying mental functioning” (APA,

2013a, p. 20) it is ultimately an atheoretical account remaining agnostic with regards to

etiology, as evidenced by a personal communication between Zucker and Cynthia Kraus

quoted in the latter’s 2015 article “Classifying Intersex in DSM-5: Critical Reflections on

Gender Dysphoria” in which Zucker writes “DSM is largely agnostic regarding etiology: a

rose is a rose, regardless of what causes a plant to be a rose” (Zucker, personal

communication, August 30, 2014; as cited in Kraus, 2015, p. 4). This is why the task force

specifies that they are unable to come to a Consensus on the GID’s status as a pathology in

the absence of clinically significant distress and impairment. I argue, however, that there is no reason

for the APA to come to a Consensus on this issue, for it simply doesn’t matter; there is

simply no way to ground the identification of a state as a psychopathology beyond clinically

significant distress and social impairment because that’s all this account consists in. Thus, it

doesn’t matter if trans* kids have brains that have been atypically masculinized or feminized

in utero or if their mothers didn’t hug them enough or breastfed them for too long; under

the DSM you can’t justify the pathologization of a trans* individual on the basis of the

organization of their brain in the same way you can’t justify diagnosing an individual with

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clinical depression in the absence of clinically significant symptoms of it, even if they exhibit

patterns of neuronal activity correlated with clinical depression in studies.

The reclassification of GID as Gender Dysphoria (GD) in DSM-V is, at least

partially, an attempt to emphasize the centrality of distress and social impairment to the

definition of mental disorder and thus narrow the diagnosis to only those who experience

dysphoria as a result of their gender variance rather than merely a variant gender identity.

Despite this shift in DSM-V and its general agnosticism regarding causality, etiology is

nonetheless the reason behind the APA’s inability to come to a consensus regarding the

GID’s status as a pathology in the absence of distress and social impairment, and

subsequently regarding appropriate medical management in children with GID. If it’s

pathological, then the use of GICE in trans* kids seems not only biopolitically appropriate,

but ethical as well, and subsequently we might even be morally obligated to intervene in such

a manner. If not, then the use of such efforts might be coercive, and would likely fall into

DSM-V’s definition of merely “socially deviant behavior,” signaling a conflict between the

individual and society rather than a “true” mental disorder. Furthermore, despite its

assertions to the contrary, mere distress and social impairment isn’t enough for something to

qualify as a mental disorder for the APA. Indeed, as Drescher notes, the removal of both

SOD and EDH from DSM-III and DSM-III-R respectively were occasioned by arguments

that merely being distressed by one’s same-sex desires didn’t seem to be adequate

justification for pathologizing and treating those desires. SOD, for example, was introduced

for the purpose “purpose of legitimizing the practice of sexual conversion therapies (and

presumably justified insurance reimbursement for those interventions as well), even if

homosexuality per se was no longer considered an illness” (Drescher, 2010, p. 435).

However, it “also allowed for the unlikely possibility that a person unhappy about a

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heterosexual orientation could seek treatment to become gay”(p. 435). Its successor, EDH,

raised concerns that “all kind of identity disturbances could be considered psychiatric

disorders,” such as those who were distressed by their height (Ego-Dystonic-Height) (p.

435). These debates about SOD and EDH and the inadequacy of the distress criteria in

particular are, I argue, actually debates about etiology and specifically whether or not

homosexuality is a normal human variant, like variations in height or race, or a pathological

one, such that it is biopolitically appropriate and ethical to fix those who seek out

normalization with regards to it, even if it is not biopolitically appropriate or ethical to force

it upon them. Thus, even though the APA defines mental disorder solely in terms of distress

and social impairment with regards to a disturbance in one’s “cognition, emotion regulation,

or behavior,” etiology in terms of the normal and the pathological development does matter

in some unclear way, and is often lurking in the background of these discussions.

I argue that the APA’s continued failure to issue official Practice Guidelines for the

treatment of GID/GD 35 years after introducing the diagnosis and thus formalizing the

pathologization of gender variance in the West, is a direct result of their failure to come to

consensus on the status of gender variance, per se, as a pathology.63 The lack of official

Practice Guidelines for treating GID by the very organization that produced it as a

diagnostic entity has tragic consequences for those captured by it. Both Drescher and the

Task Force (Byne et al., 2012) point out that it is used by multiple insurance companies in

the United States to justify their failure to cover hormonal and surgical interventions for the

purposes of gender reassignment. As Drescher (2010) writes,

While it is often asserted that the DSM (and ICD) diagnoses provide the only

pathways to insurance reimbursement for trans individuals seeking medical 63 The World Health Organization followed the APA’s lead and included transsexualism and GID of childhood in the 1992 version of ICD-10 (WHO, 1992; Drescher, 2010, p. 439).

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assistance, APA has issued no treatment guidelines for either GIDC or adult GID.

This omission is in stark contrast to an increasing proliferation of APA practice

guidelines for other DSM diagnoses. In addition, the absence of a formal APA

opinion about treatment of a diagnosis of its own creation has contributed to an

ongoing, troubling problem: many health care insurers and other third party payers

claim that SRS is an ‘‘experimental treatment,’’ an ‘‘elective treatment,’’ or ‘‘not

medically necessary’’ and therefore not reimbursable or covered under most

insurance plans and treatment is not always accessible to wards of governmental

agencies, such as foster care and prison systems. In other words, the presence of the

GID diagnosis in the DSM is not serving its intended purpose of creating greater

access to care—one of the major arguments for diagnostic retention (p. 449).

Both Drescher (2010) and the Task Force (2012) recommended the APA issue

Practice Guidelines in order to remedy these problems, despite the latter’s acknowledgement

that GID will likely not meet the criteria set out by the APA’s Steering Committee on

Practice Guidelines (SCPG) which develops such documents. These criteria include

information about the 1) prevalence of the disorder and 2) quality of the relevant database

(Byne et al., 2012, p. 760). Indeed, they explicitly acknowledge that good quality evidence on

GID will likely never be possible, writing,

The randomized double blind control trial is the study design that affords the highest

quality evidence regarding the comparative efficacy of various treatment modalities;

however, no such trials have been conducted to address any aspect of the treatment

of GID. Given the very nature of GID, such trials, or even unblinded trials with

random assignment to treatment groups, are not likely to be forthcoming due to a

lack of feasibility and/or ethical concerns (p. 760).

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Nonetheless, the Task Force recommends the APA develop Practice Guidelines on the basis

of the database available and expert consensus, arguing that it would, among other things,

ease obstacles to care faced by trans* individuals, as well as allow the APA to “frame its

position on what constitutes realistic and ethical treatment goals as well as what constitutes

ethical and humane approaches to treatment” (p. 768). Despite this, the APA has still not

issued official Practice Guidelines for the treatment of GD. It did, however, issue an official

“Fact Sheet” via its website accompanying the publication of DSM-V, announcing its

reclassification as Gender Dysphoria. In addition, the APA acknowledged the subjectifying

effects of psychiatric diagnoses and affirmed, for the first time publically, its commitment to

ensuring that trans* patients have access to gender confirming interventions, while also

asserting gender variance in itself to be non-pathological (though falling short of endorsing a

normal human variant view). As the Fact Sheet states:

DSM not only determines how mental disorders are defined and diagnosed, it also

impacts how people see themselves and how we see each other. While diagnostic

terms facilitate clinical care and access to insurance coverage that supports mental

health, these terms can also have a stigmatizing effect. DSM-5 aims to avoid stigma

and ensure clinical care for individuals who see and feel themselves to be a different

gender than their assigned gender. . . . It is important to note that gender nonconformity is not

in itself a mental disorder [emphasis added]. The critical element of gender dysphoria is

the presence of clinically significant distress associated with the condition (APA,

2013b paras. 2-3).

In addition to detailing some of the ways in which GD as a diagnosis differs from GID

under DSM-IV, the Fact Sheet goes on to state these changes are the product of a

compromise between the need for diagnostic categories that better represent and the need to

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ensure access to medical care, with the conclusion that “ultimately, the changes regarding

gender dysphoria in DSM-5 respect the individuals identified by offering a diagnostic name

that is more appropriate to the symptoms and behaviors they experience without

jeopardizing their access to effective treatment options” (para. 11).

In the following and final substantive section of this chapter, I briefly review the

specific differences between GID in DSM-IV-TR and GD in the DSM-V, and examine a set

of explicit arguments justifying the continued pathologization of trans* lives. The APA’s

assertion in the quote above—that gender variance in the absence of dysphoria is not a

mental disorder—means it exists in this grey area between the normal and the pathological,

not yet a normal human variant, but not a pathology either. Its inability fully to enter the

realm of the normal or of the pathological is the result of the APA’s inability to come to a

consensus on its status. But dysphoria itself clearly isn’t enough; indeed, if gender variance is

a normal feature of human diversity, then whatever distress gender variant individuals

experience as a result of it is a socially constituted conflict between the individual and

society. Thus, unique arguments must be given to justify the continued pathologization of

GD that paradoxically do not rely on any standard of account of pathology and can account

for its unique features. Specifically, GD (and GID before it) are one of the few mental

disorders to appear within the DSM that are treated with therapies which aim at the level of

the somatic body rather than at the level of the mind, and which reduce an individual’s

distress and social impairment through the confirmation rather than the reduction or

elimination of their symptoms.64 Unlike with other mental disorders such as Obsessive

64 Another such condition is Body Integrity Identity Disorder (BIID) referring to the desire for healthy limb amputation in order to bring one’s physical body into alignment with how one feels it both “really is” and should be (i.e. without the limb). Interestingly, BIID appears in the DSM-V under the differential diagnoses sections for both Body Dysmphoric Disorder and Gender Dysphoria (i.e. treating clinicians should rule out BIID when diagnosing these

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Compulsive Disorder or Separation Anxiety Disorder, the aim of treatment for GID is not

to reduce distress and social impairment by reducing the characteristic symptoms associated

with the condition (here, gender variance). Rather, distress and social impairment are

reduced through the somatic confirmation of one’s symptoms, fixing their body in order to

bring it into an apparent cis-alignment with their mind. With this in mind, I seek to make

explicit how the production of passably cisgendered life through the diagnosis of Gender

Dysphoria is justified under DSM-V, in the absence of appeals to pathology.

VI. From Gender Identity Disorder to Gender Dysphoria Drescher (2010) identifies five issues raised by trans* activists that dominated debate

over GID in the lead up to DSM-V: 1) that GID as a diagnosis only served to stigmatize and

harm an already stigmatized and highly vulnerable population; 2) that removal of GID would

prevent access to care; 3) that retention of GID would allow for the reintroduction of

homosexuality; 4) that the use of GICE to secure cisgendered futures for trans* kids was

“unscientific, unethical and misguided” and 5) individual members of the Working Group—

specifically Zucker and his mentor Ray Blanchard—were transphobic and should be

removed (p. 428). After dismissing the third and fifth concerns as unfounded, Drescher

acknowledges that many of those issues raised in relation to GID mirror those raised by

earlier critics in relation to Homosexuality. He writes,

As in the case of homosexuality, arguments for removal of the “trans diagnoses”

include societal intolerance of difference, the human cost of diagnostic

stigmatization, using the language of psychopathology to describe what some

consider to be normal behaviors and feelings and, finally, inappropriately focusing

patients) (APA, 2013 pp. 246, 458). However, it is not itself a DSM-V diagnosis (as each mention makes explicit) (pp. 246, 458).

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psychiatric attention on individual diversity rather than opposing social forces that

oppress sexual and gender nonconformity (p. 429).

Drescher goes on, however, to point out key ways in which the question of removing

GID differs from the question of removing homosexuality from the DSM, the most

important of which is access to medical care. Indeed, these are the grounds upon which he

justifies the continued pathologization of GID in the DSM, though he urges a refinement of

categories in ways that did actually show up in DSM-V (such as narrowing them to exclude

those gender variant individuals who are not “anatomically dysphoric or distressed”) (p.

454). Fascinatingly, Drescher makes a purely consequentialist argument for the continued

pathologization of GID on the basis of access to care that in no way references pathology or

etiology. Simply put, he argues that physicians must “take to heart the dictum ‘first do no

harm’” and on that basis he concludes that

at this moment in time, I believe the less harmful choice would be retaining and

modifying the adolescent and adult GID diagnostic criteria to make them more

narrowly inclusive of individuals who are distressed about the dissonance between

their anatomical and psychological gender (p. 454).

Drescher acknowledges the serious, stigmatizing effects of GID, but argues that the

pathologization of GID has not posed a major obstacle to the rapid “acceleration of legal

trans protections in the last decade” (p. 454). He acknowledges this may be due to rapidly

changing social mores, which themselves might come to one day make both gender variance

and transition itself seem like normal human variants, writing,

it is entirely possible that the lagging social acceptance of gender variance will catch

up with the more advanced social normalization of homosexuality. For example, gay

marriage, once unimaginable, is now the law of the land in many places. It is not

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unthinkable that, in the future, gender variant people transitioning from one sex to

another might be treated by medical specialists who, like obstetricians, use medical

and surgical interventions to facilitate what society considers to be a normal life

event (p. 453).

However, because this future does not obtain today, Drescher argues for the inclusion of a

restricted version of GID in DSM-V, while at the same time acknowledging that retention

might slow down progress towards that future:

While retaining the diagnoses, even with modification, can undoubtedly contribute to

perpetuating stigma (in a manner similar to being diagnosed with major depression

or bipolar disorder can be stigmatizing), such an outcome would constitute a lesser

harm to anatomically dysphoric members of the trans community than the denial of

access to medical and surgical care likely to ensue following removal from the DSM

(p. 454).

Thus, Drescher argues for the restriction of GID to those who subjectively determine they

require access to care, specifically for the purpose of providing access to care. And this is

basically what was enshrined in DSM-V through the reformulation of GID as GD, plus a

few other fascinating additions.

In their 2013 “Memo Outlining Evidence for Change for Gender Identity Disorder”

(MOEC), the GID subworkgroup (Zucker et al.) recommended eleven substantive changes

to GID in DSM-V, which I will group into four sets.65 All of these changes were more or

less adopted in DSM-V (with the exception of one which I will flag) and thus, these are the

65 MOECs or Memos Outlining Evidence for Change, are documents which outline and justify all of the revisions the work groups for the various sections of the DSM recommend for their respective section to the APA’s Board of Trustees (Zucker et al., 2013). The Board of Trustees decides which revisions to accept and which to reject and thus, have the final say regarding the official content of the DSM.

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four primary ways in which GD under DSM-V differs from GID under DSM-IV-TR (See

Appendix B summarizing GID and GID-NOS under DSM-IV-TR and GD under DSM-V).

The first set of changes has to do with the wording of the introductory descriptor to

the A criteria and to the status of the A1 criterion for GD in children. Whereas under GID

the introductory descriptor to the A criteria read: “A strong and persistent cross-gender

identification (not merely a desire for any perceived cultural advantages of being the other

sex). In children, the disturbance is manifested by four (or more) of the following” (APA,

2000, p. 581), under GD, the introductory descriptor to the A criteria reads “A marked

incongruence between one’s experienced/expressed gender and assigned gender, of at least 6

months’ duration, as manifested by at least six of the following (one of which must be

Criterion A1) (APA, 2013a, p. 452). The wording of the A criterion has been changed to

stipulate a minimal threshold in duration in order to distinguish between “very transient and

persistent GID,” and to include the term “incongruence” as this “better reflects the core of

the problem, namely, an incongruence between, on the one hand, the identity that one

experiences and/or expresses and, on the other hand, how one is expected to live based on

one’s assigned gender (usually at birth)” (Zucker et al., 2013, p. 903). Further, the GID

subworkgroup identify incongruence as preferable to “cross-gender identification” because it

does not imply “a strictly binary gender identity concept” that is “no longer in line with the

spectrum of gender identity variations that one sees clinically” (p. 903). “Sex” is also replaced

with “gender” in DSM-V “in order to make the criteria applicable to individuals with a

DSD” as well as provide an “exit clause” for those who have successfully transitioned, so

that they can “‘lose’ the diagnosis” (p. 903). Finally, the proviso that one’s cross-gender

identification not be a sign of or “merely a desire for any perceived cultural advantages of

being the other sex” was removed in line with the DSM’s general agnosticism regarding

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etiology. As the MOEC writes,

there is no reason to ‘impute’ one causal explanation (in this case, a cultural

advantage hypothesis) for GD without mentioning any others. Deleting this phrase

would be consistent with a purely phenomenological approach that eschews any

reference to putative underlying causal mechanism with regards to the diagnostic

criteria (p. 903).

Making the A1 criterion necessary for GD-C under DSM-V was done in order to avoid the

possibility of false positives, or children being inappropriately diagnosed with GID-C on the

basis of social (and particularly parental concerns) about “pervasive cross-gender behavior

(gender nonconformity or gender variance)” in the absence of a expressed desire to be the

other gender (p. 904). Under DSM-IV-TR, children only required 4 (or more) of the 5 listed

diagnostic criteria and thus could be diagnosed with GID-C on the basis of their behavior

and preferences alone, in the absence of a professed desire to transition. Interestingly,

allowing for this possibility was an explicit choice made by the DSM-IV subcommittee on

GID in order to allow for the possibility that there

might be a small number of children who showed all the signs of a GID (including

the criteria from Point B), yet did not express the desire to be of the other gender,

perhaps because of reasons of social desirability, a harsh social environment, etc. It

was therefore argued at the time that the desire to be of the other gender need not be

a necessary symptom indicator (p. 904).

Importantly, however, the language is changed to merely state “strong desire,” rather than

“repeatedly stated strong desire” or “expressed strong desire,” for example, in order to

provide themselves an “out” and “capture some children who, in a coercive environment,

may not verbalize the desire to be of the other gender” (p. 905).

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The second set of changes have to do with the B criteria for the condition. Under

GID, the B criteria read as follows:

Persistent discomfort with his or her sex or sense of inappropriateness in the gender

role of that sex. In children, the disturbance is manifested by any of the following: in

boys, assertion that his penis or testes are disgusting or will disappear or assertion

that it would be better not to have a penis, or aversion toward rough-and-tumble

play and rejection of male stereotypical toys, games, and activities; in girls, rejection

of urinating in a sitting position, assertion that she has or will grow a penis, or

assertion that she does not want to grow breasts or menstruate, or marked aversion

toward normative feminine clothing. In adolescents and adults, the disturbance is

manifested by symptoms such as preoccupation with getting rid of primary and

secondary sex characteristics (e.g., request for hormones, surgery, or other

procedures to physically alter sexual characteristics to simulate the other sex) or

belief that he or she was born the wrong sex (APA, 2000, p. 581).

However, under GD, the B criteria reads: “The condition is associated with clinically

significant distress or impairment in social, school, or other important areas of functioning”

(APA, 2013a, p. 452). Thus, under GD, we see the merging of the A criterion (cross-gender

identification) and B (persistent discomfort) criterion from DSM-IV-TR and the rewording

of the point B criterion to “emphasize distress, impairment and increased risk of suffering or

disability” (Zucker et al., 2013, pp. 903, 906). The GID subworkgroup recommended

merging the A and B criteria on the basis that existing studies failed to support this

distinction (p. 904). However, it is worth noting that this merger makes sense under DSM-V

even without supporting studies, given that merely gender variant individuals (or those who

express cross-gender identification) without persistent dysphoria or discomfort is not the

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population that the APA is attempting to capture with this diagnosis. In its MOEC, the GID

subworkgroup motivate rewording the point B criterion based on consensus among them

“that some adolescents who are planning gender change and are undergoing puberty-

blocking hormonal therapy are not distressed when a clear path towards gender change is

mapped out for them, but may become strongly distressed if parents or others try to strongly

block this path” (p. 906). Interestingly, this is the only one of the subworkgroup’s

recommendations that the APA did not adopt in full. In DSM-V, the B criterion for GD in

adolescents and adults in DSM-V merely stipulates that the “condition is associated with

clinically significant distress or impairment in social, occupational, or other important areas

of functioning” rather than that “the condition is associated with clinically significant distress

or impairment in social, occupational, or other important areas of functioning, or with a

significantly increased risk of suffering, such as distress or disability,” as the subworkgroup

suggested (APA, 2013a, p. 453; Zucker et al., 2013, p. 906).

The third set of changes deal with the wording of the diagnostic criteria for GD in

both children and adults and adolescents, to make both more detailed, as well as more clearly

polythetic with a minimal threshold for the latter diagnosis. As the subworkgroup note, “in

DSM-IV, the GID criteria for adolescents and adults were somewhat sketchy and, for some,

even lacked a reference to intensity or frequency (e.g., ‘‘a stated desire to be the other sex’’)”

(Zucker et al., 2013, p. 905). Furthermore, they once again appeal to a spectrum rather than

binary notion of gender and specifically acknowledge that individuals can accordingly vary

with regards to the medical interventions they pursue, writing,

The current formulation makes it more explicit that a conceptualization of GD

acknowledging the wide variation of conditions will make it less likely that only one

type of treatment is connected to the diagnosis. Taking the above regarding the

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avoidance of male–female dichotomies into account, in the new formulation, the

focus is on the discrepancy between experienced/expressed gender (which can be

either male, female, in-between or otherwise) [emphasis added] and assigned gender (in

most societies male or female) rather than cross-gender identification and same-

gender aversion (p. 905).

The final and most obvious set of changes deal with the categorization of GID, the

diagnoses themselves and their specifiers. GD was removed from the supracategory Sexual

and Gender Identity Disorders (which also housed the Paraphilias and Sexual Dysfunctions)

and given its own chapter under its new diagnostic name, Gender Dysphoria. In their

“Memo Outlining Evidence for Change for Gender Identity Disorder” (MOEC) the GID

subworkgroup recommended this re-categorization given that the association of GID with

Paraphilias is “somewhat stigmatizing” and that generally speaking the theoretical overlap

among GID, Sexual Dysfunctions, and Paraphilias “is far from complete,” though they do

note “there can be a co-occurrence of one paraphilia, Transvestic Fetishism, with GID in

adolescents and adults” (Zucker et al., 2013, p. 903). They motivate the move in diagnosis

from Gender Identity Disorder to Gender Dysphoria as accomplishing two goals: 1)

highlighting “a conceptual change in the formulation of the diagnosis” in terms of “distress

(dysphoria) and not identity per se” and 2) satisfying “critics concerned about the

stigmatizing use of the ‘disorder’ term in the name of the diagnosis” (p. 902). The diagnostic

categories for GID in adults and adolescents as well as GID in children underwent a simple

shift in nomenclature (i.e., GID-C to GD-C). However, where we had Gender Identity Not

Otherwise Specified under DSM-IV-TR (reserved in part for those with DSD who were

excluded from the other two categories), under DSM-V, we have Other Specified Gender

Dysphoria (OSGD) for those who exhibit symptoms “characteristic of gender dysphoria

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that cause clinically significant distress or impairment in social, occupational, or other

important areas of functioning” but do not meet the full criteria for gender dysphoria for a

reason the clinician specifies (e.g. their symptoms last less than the required 6 months), and

Unspecified Gender Dysphoria (UGD) for OSGD patients who fail to meet the requirement

for GD for unspecified reasons (APA, 2013, p. 459). With regards to Specifiers, we see the

removal of the sexuality specifier in DSM-V and the introduction of two new specifiers:

“with a DSD” and “if posttransition.” All three of these changes are noteworthy.

The GID subworkgroup motivate the removal of the long controversial sexuality

specifier on their conclusion that “sexual attraction (sexual orientation) per se plays only a

minor role in contemporary treatment protocols” given that gender-confirming interventions

are no longer restricted to those who will be heterosexual posttransition (pp. 906-907). They

write,

this is very different from what happened clinically in the early years of gender-

reassignment surgery decisions that were managed by psychiatrists in specialized

gender identity clinics who would only provide treatment to individuals attracted to

their own natal sex and would not endorse the medical creation of post-operative

“homosexuals” (p. 907).

They nonetheless suggest that physicians continue to take note of trans* patients’

sexuality given that “sexual attraction (sexual orientation) is of interest to researchers

in the field”—just that it not be used as a specifier to subgroup the population (p.

907).

The MOEC recommends the inclusion of the DSD specifier (which they note

was not an exclusionary criteria for GID until DSM-IV) in light of the fact that

“considerable additional evidence has accumulated that some individuals with a DSD

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experience GD and may wish to change their assigned gender”(Zucker et al., 2013, p.

907). Fascinatingly, the GID subworkgroup very cautiously and ambiguously suggests

that GD in those with DSDs may be causally different from GD in those without,

vaguely noting that,

From a phenomenologic perspective, DSD individuals with GD have both

similarities and differences to individuals with GD with no known DSD.

Developmental trajectories also have similarities and differences. The presence of a

DSD is suggestive of a specific causal mechanism that may not be present in

individuals without a diagnosable DSD (p. 907).

However, given the DSM’s general agnosticism regarding causality, differing causal

mechanisms and developmental trajectories don’t really matter in terms of diagnosis and

treatment, and thus the re-inclusion of those with DSDs into the population of those

diagnosable with GD make sense—as Zucker says, “a rose is a rose, regardless of what

causes a plant to be a rose” (Zucker, personal communication, August 30, 2014; as cited in

Kraus, 2015, p. 4).

Finally, the subworkgroup recommends the inclusion of a posttransition specifier not

in order to recognize or distinguish those who have transitioned as an explicitly unique

subgroup or population, but specifically in order to ensure access to care. As they write,

many individuals no longer meet the criteria for GD after transition, given that transition

generally resolves one’s dysphoria and social impairment, and, further, following gender-

confirming interventions, their behaviors and preferences that were previously symptoms

can no longer be read as such. Nonetheless, these individuals often still require access to

medical care in terms of “chronic hormone treatment, further gender-confirming surgery, or

intermittent psychotherapy/counseling to facilitate the adaptation to life in the desired

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gender and the social consequences of the transition” (Zucker et al., 2013, p. 907). The

posttransition specifier is modeled on the concept of “in partial or full remission.” The

MOEC authors note this is not quite the same in this case, in light of the need for continued

access to care even though the dysphoria and social impairment lessen in these patients (as

they do in other patients we might deem to be in remission on such a basis, such as mood

disorder patients). They do however note that remission in the standard sense of the term

may be applicable to that majority of GD-C patients whose condition fails to persist.

Under DSM-V, then, pathological gender variance is understood in terms of

incongruence between the gender one expresses and/or experiences and “how one is

expected to live based on one’s assigned gender (usually at birth),” in combination with

resultant dysphoria or distress and social impairment (Zucker et al., 2013, p. 903).

Importantly here, gender, along with sex, is understood as existing along a spectrum, such

that individuals may vary in terms of the medical interventions they choose (from no

interventions to hormones alone, to hormones in combination with some or all surgical

interventions available). The reason for or cause of gender variance itself is irrelevant; all that

matters is that it causes dysphoria, the reduction of which is the primary target of treatment.

GID as GD maintains its distinctive status within the pantheon of mental disorders insofar

as the reduction of dysphoria is achieved via the confirmation rather than the lessening of

symptoms through interventions at the level of the somatic body instead of the mind.

Further, it is one of the few mental disorders (and likely, pathologies in general) in which the

patient is granted primary authority with regards to determining the necessary treatment

plan. By this, I mean that while health care professionals play a role in the medical decision-

making process (e.g. providing both empirically derived information and clinical expertise

with regards to various treatment options), it is the patient who stipulates what type or level

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of interventions are required to confirm their gender as they experience and understand it.

All of this brings me to me to four conclusions regarding pathological gender

variance or pathologies with regards to cisgendered function, and sex, gender and sexuality

as the elements out of which those pathologies are constituted. First, intersex conditions and

GD are both, primarily, bureaucratically constituted pathologies, with the sole function of licensing

or preventing the medical normalization of particular bodies in particular ways, as well as the

production of those knowledges that both enable and justify such forms of normalization.

Kathy Ferguson (1984) argues that bureaucracy “needs to be understood both as a structure

and as a process” (p. 6). It is both, she argues, “a fairly stable arrangement of roles and

assignment of tasks” that are often experienced as “static and fixed authority structures,” and

“a temporal ordering of human action that evolves out of certain historical conditions

toward certain political ends” (p. 6). The traits Ferguson lists as characteristic of bureaucratic

organizations eerily echo Foucault’s characterization of disciplinary institutions such as the

school and the clinic:

a complex rational division of labor, with fixed duties and jurisdictions; stable, rule-

governed authority channels and universally applied performance guidelines; a

horizontal division of graded authority, entailing supervision from above; a complex

system of written record-keeping based on scientific procedures that standardize

communications and increase control; objective recruitment based on impersonal

standards of expertise; predictable, standardized management procedures following

general rules; and a tendency toward the way of life the organization requires

(Ferguson, 1984, p. 7).

Bureaucracies, like other disciplinary institutions, discipline both those they take up or

target (i.e. criminals and patients), and those who work within them (i.e. prison guards

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and health care professionals) to ensure they do that disciplinary work effectively and

efficiently.

As administrative structures, bureaucracies seem, as Ferguson emphasizes,

static and politically neutral in ways that obscure their biopolitical functions and their

complex, contingent histories. Moreover, Spade (2011) argues that administrative

institutions and their bureaucratic demands/obstacles are primary vectors via which

life chances are maldistributed among populations (p. 110). Intersex conditions and

GD are, I conclude, primarily bureaucratic entities, categories via which life chances

are maldistributed that certain (i.e. cisgendered or cis-passing) lives are made live while

others (trans*, or at least visibly trans*) lives are let die. In the case of intersex infants

and trans* children, the pathology is used to justify the use of efforts to secure

cisgendered futures, in accordance with the initial purpose or goal of gender and its

production by Money in the context of intersex management; gender was meant to

stabilize the heterosexual matrix in a cisgendered fashion and the pathologization of

gender variance allows this project to continue where trans* and intersex kids are

concerned. In the context of intersex and trans* management beyond childhood,

however, pathologization with regards to cisgendered function justifies the production

of lives that pass as cisgendered, even if they truly aren’t such—an end towards which

the use of puberty-blockers and fetal dex are directed.66 Given Money’s initial

pessimism regarding the success of GICE beyond childhood, the appearance of

cisgendered life is the best outcome available to those whose gender variance persists

beyond childhood.

66 The ability of those capable of providing informed consent to choose the level and types of gender confirmation they desire means that achievement of this end is often frustrated within the clinic.

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Additional evidence of the bureaucratic nature of pathologies of cisgendered

function can be seen in the fact that gender incongruence is importantly not enough to

receive a diagnosis of GD and thus gain access to gender-confirming interventions for

those with GD; it must exist in combination with distress and social impairment as a

result of that incongruence. The winnowing of the diagnosis to only those with

dysphoria or distress and social impairment means that GD functions, ultimately, as a

way of identifying only those who both want and consider themselves to need access

to gender confirming interventions. Further, the APA’s purported agnosticism

regarding etiology means whatever biological factors might influence gender

development are irrelevant, and thus whether or not gender variance is a pathology in

itself does not matter—the only thing that does is the desire and belief that one needs

access to these forms of normalization. The diagnosis is thus nothing more than a

mechanism via which one might overcome bureaucratic obstacles to particular forms

of gendered normalization and is thus primarily bureaucratic in nature.

The bureaucratic nature of pathologies of cisgendered functions guarantees

that they are, at least in part, socially constituted entities. One could argue, however,

that while they might function primarily at the level of administrative bureaucracies in

the service of particular biopolitical ends, they nonetheless represent or capture certain

important biological facts about the world. This brings me to my second conclusion:

not only are both pathologies of cisgendered function, and the three elements of the

heterosexual matrix that produce cisgendered life as we know it are in no way

biological, they are all, necessarily, socially constituted entities. The pathologies function

within socially constituted, bureaucratic networks of knowledge/power in order to

license submission to or withhold access from various forms of gender-confirming

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normalization. Further, given that from the perspective of the bureaucratic, disciplinary

institutions that govern abnormal gender development, biological facts do not matter,

it is not clear that biological facts can matter where “normal” cisgendered lives are

concerned either. Evidence of this can be seen in Meyer-Bahlburg’s (2010) rumination

regarding what a biological explanation of gender incongruence would and would not

mean for biomedical definitions of normal and abnormal life in terms of the alignment

between sex-gender-sexuality and for medical practice:

Let us assume that in the future one or several of the human biological findings

above will be shown to be replicable in G[ender] I[dentity] V[arient] samples by

independent, reliable laboratories. Would the gender-atypical behavior (including

sexual orientation) in such cases then be considered ‘‘pathologic’’? And what about

those who become gender-dysphoric and initiate gender change? Would public

opinion and government officials not likely refer to a ‘‘correction of wrong gender

assignment,’’ in parallel to the analogous cases with somatic intersexuality? Again,

on the other hand, if patient-initiated gender change in such GIV cases is a

‘‘correction,’’ a question arises about the psychiatric status of those cases who

develop a lasting identification with the assigned gender. The examples above show

that there is no clear scientific solution based on etiology alone to the psychiatric

categorization of behavior and identity outcomes of pathological medical conditions

(p. 466).

Even if we discover a distinctively male vs. female brain or gay vs. straight brain, it

would make no difference at the level of those bureaucratic networks of medical

knowledge/power which practically discipline and normalize gender, and maldistribute

life chances with regards to it. Indeed, this is why—as pathologies—intersex

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conditions/DSDs and GD are unable to represent biological or natural kinds; sex,

gender and sexuality are not biological kinds, but the socially constituted elements of

cisgendered life as a norm, historically produced in the context of medicine as

technologies via which biopower might enforce that norm. If biology plays any role

where sex, gender, and sexuality are concerned, it is rhetorical in nature. In the context

of intersex conditions and GD, particular biological traits (e.g. the presence or absence

of a uterus or XY chromosomes) or biological kinds (e.g. male or female brains) are

invoked as pre-discursive, biological evidence used to justify particular normalizing

interventions, as well as the programs of clinical research that make such interventions

possible and further legitimate their use. For example, consider the argument that 46

XX CAH infants with severely masculinized genitalia should be assigned male because

of their likely similarly masculinized brains or that MTF individuals should receive

gender-confirming interventions as their gender dysphoria and social impairment likely

indicate they have a feminized brain.67 However, the positing of gender here as pre-

discursive is itself a discourse (Butler, 1990, p. 11). Furthermore, as Meyer-Bahlburg’s

quote above makes clear, the biopolitical goal is the production of lives in which

gender develops in cis-alignment with sex—or, as he puts it, “assigned gender”—

leading to questions about the “psychiatric status” of those with biologically trans*

brains who nonetheless live “normal” cisgendered lives. There can be “no clear

scientific solution based on etiology alone to the psychiatric categorization of behavior

67 Jordan-Young notes that biologically determinist accounts of gender and sexuality in terms of brain organization theory are increasingly invoked in the context of political arguments for equal rights (e.g. “gay men, lesbians, and transgender people of both sexes have brains that are ‘wired’ differently from most people”) (p. 5). Further, acceptance of these accounts is increasingly positioned as “an important component of combating anti-gay prejudice” such that “critics of the idea are increasingly cast as not only antiscience, but antidiversity” (p. 5)

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and identity outcomes of pathological medical conditions” because neither sex, gender,

sexuality, nor cisgendered life is biological kind such that biological facts can render

them incoherent. A lot of women have cervixes, but so do some men. Further, many

individuals with ambiguously sexed bodies live cisgendered lives featuring

heterocopulative, reproductive intercourse, while others do not. Sex, gender and

sexuality, as well as pathologies with regards to them, are thus nothing more (or,

nothing less) than socially constituted entities.

Finally, while all of this assumes that people should receive the gender-

confirming interventions they desire and believe that they need, there is an ethically

important distinction between the way in which the medical management of intersex

conditions and GD practically cashes out in terms of those patients able to provide

informed consent (i.e. adolescents and adults) and those who cannot (i.e. children).

Whereas those who are able to provide informed consent are granted authority with

regards to their gender such that it is their gender dysphoria which initiates the process

of gender-confirming normalization, intersex and trans* children treated with medical efforts to

secure cisgendered futures are denied this authority. Furthermore, while some trans* kids may

be granted this authority if they happen to see a psychiatrist who is personally against

the use of GICE, the steady frequency with which intersex normalization occurs

means that intersex children are rarely (if ever) afforded the authority to stipulate what

(if any) somatic changes are necessary to bring their bodies into alignment with their

gender such that it is confirmed, let alone develop that gender in the first place.68 That

68 I do not mean to imply that those granted the authority over their gender such that it is their gender dysphoria that initiates the normalizing process also have the authority to choose the forms of gender-confirming normalization they access. Indeed, there are multiple bureaucratic barriers to accessing care, such that many are unable to access gender-confirming interventions specifically because they seek them for the reason of gender

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is, it is not their distress and social impairment which constitutes the need for their

gender to be confirmed. Rather, this authority is left in the hands of health care

professionals and proxy decision-makers who decide what interventions are necessary

to make the child a “normal” boy or girl. In this sense, medical efforts to produce

cisgendered lives for intersex and trans* children might be better described as treating

these conditions by proxy, by which I mean the distress and social impairment such

efforts aim to relieve is not the child’s, but rather, that of parents and treating health

care professionals. Indeed, it is not clear to me that an infant has or can have a gender,

let alone a dysphoric one, or a conception of their body as sexed, with regards to

which incongruence is indexed. The distress experienced as a result of an intersexed

infant’s incongruent sex-gender can only be that of those who actually register that

incongruence. Further, rather than attempting to stave off the future social impairment

an ambiguously sexed body is assumed to necessarily bring, such efforts actually aim at

relieving others’ social impairment with regards to relating to the child as a gendered

subject. We just don’t know how to engage with that infant as a human subject in the

absence of gender—that is, whether to treat them like a boy or a girl, or what to expect

confirmation. For example, insurance companies will cover gender-confirming interventions like mastectomies, or breast reductions, as long as they are being done for reasons of “medical necessity” (e.g. to treat cancer or alleviate back pain) and not to confirm gender (Butler, 2004, 85-87; Namaste, 2005; Spade 2011) – this is the reason why I argue for the radical reconstruction of these insitututions. This impotence experienced by many trans* and intersex people in the face of the bureaucratic administration of medical knowledge/power might make my use of the term “authority” appear hyperbolic. I use it because while it may be true that many trans* individuals able to provide informed consent have little authority over the way in which their transition occurs or how long it takes, they are nonetheless granted authority with regards to their gender insofar as they are the ones who get to assert whether their gender exists in misalignment with their sexed body. The fact that it is their distress and social impairment regarding the relationship between their sexed body and gendered self that constitutes that relationship as pathological and in need of “fixing” via gender-confirming normalization is ethically important.

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from them as such. While it might turn out in the case of a trans* kid that we were

wrong about whether they were really a boy or girl, and thus misapplied gendered social

norms, the intersex infant leaves us unable to appeal to norms, correctly or not, from

the start.

VII. Conclusion The three elements of the heterosexual matrix—sex, gender, and sexuality—as

well as those pathologies of cisgendered function constituted with regards to them are

thus socially constituted and primarily bureaucratic entities. Within the networks of

disciplinary institutions that administrate medical knowledge/power, they function to

license the submission of certain populations to various forms gender-confirming

normalization, while preventing other populations from accessing them. In this way,

these seemingly neutral bureaucratic institutions function biopolitically to ensure that

cisgendered lives are made live under biopower while trans* (or at least, visibly trans*)

lives are let die. In the case of intersex* and trans* children treated with GICE, these

pathologies justify the use of medical interventions to secure a cisgendered future on

individuals unable to consent. Thus, such patients are denied the authority over their

gender granted to adolescents and adults with such conditions. Indeed, this authority is

why even though treatment models were (and remain) constructed with the

assumption that treatment aims at full transition in order to produce a life that can pass

as cisgendered, this is not (and cannot) be required. Treatment strategies that are thus

considered unethical in the context of patients able to consent are somehow

simultaneously constituted as ethical in the context of the more vulnerable populations

of patients unable to consent. I argue this discrepancy is an artifact of two main

factors: 1) the bureaucratic, socially constituted nature of both cisgendered life and the

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elements of the heterosexual matrix that constitute it as normal within the context of

biopower, and 2) that in the context of children, the dysphoria and social impairment

interventions aim at relieving is that experienced by health care professionals and

guardians by proxy. Furthermore, unlike trans* children, whose gender variance only

emerges in relation to the sexed body (or gender assigned at birth), intersex children

draw into the relief the fiction of naturally dimorphic, pre-discursive sex that gender

was introduced specifically to secure, visibly failing to provide a stable ground upon

which gender expectations can be built.

In the final chapter of this dissertation, I turn to consider the implications

these conclusions have for not only the ethical medical management of these

conditions, but also for ethically producing knowledge and theorizing about them, as

well as the individuals who have them. Further, I consider what these conclusions

mean with regards to effectively resisting the oppression that individuals with

pathologies of cisgendered function face.

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Chapter Five: Ethics, Medical Knowledge/Power and Politics After DSD

I. Introduction

In this chapter, I examine the implications of my conclusions from Chapter Four for

ethics, medical knowledge/power, and politics post-Intersex/DSD. Specifically, I provide

Foucauldian justifications for the following series of prescriptive claims: that a moratorium

be placed on the performance of medical efforts to secure cisgendered futures for those

unable to provide informed consent; that those able to provide informed consent and who

desire access to gender-confirming interventions receive it in a timely and affordable

manner; that both the DSD nomenclature and the gender dysphoria be jettisoned as

diagnoses; that those institutional bureaucracies which administer medical knowledge/power

be radically reconstructed so that those who can provide informed consent can access

gender-confirmation in the absence of pathology (and so that sex/gender designations

cannot function as gatekeepers to care more generally); and finally that political theory and

resistance focus on those institutional bureaucracies responsible for the government of

gender—and subsequently, for the maldistribution of life chances for those with pathologies

of cisgendered function—and their radical reconstruction.

Some might argue that issuing these kinds of concrete prescriptions for medical

practice, as well as theoretical and activist politics from within a Foucauldian theoretical

framework, is at tension with the use of the framework itself. Indeed, the liberatory potential

(or lack thereof) of Foucault’s project is one of the most controversial and debated aspects

of his works—particularly among academic feminists. There is no outside of power for

Foucault, no pre-discursive, natural, or authentic self to which one can return—positing

such is itself a discourse, a production or deployment of modern biopower. To issue new

norms and call them liberatory is not to liberate oneself or others from power, but simply to

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re-deploy it in new ways and on new terms. An outcome of this redeployment may involve

the “liberation” of some populations insofar as new ways of living—new norms—become

available. It seems then that our only escape from current forms of subjectivation is into new

forms of subjectivation. Further, given the productive nature of biopower in terms of

subjectivation or “assujettissement,” it is unclear whether freedom, and thus resistance, is

even available to the Foucauldian subject. If the subject is constituted by power through the

interplay of discursive and non-discursive elements like institutional and somatic practices,

then the subject seems to be determined by power with regards to their desires, their

choices, and their incapacity for resistance. If there is no freedom for Foucault, no outside of

power, then any prescriptions I make seem be nothing more than arguments for the

constitution of new norms through the productive redeployment of power. In the same way

that positioning sex as pre-discursive is a discourse, so too is my positioning of this

redeployment of power as ethical a discourse. This is the quandary of Foucauldian

genealogy, in particular, as a theoretical framework: it is immensely useful for understanding

the discursive and practical subjectification and subjugation of specific populations (such as

women) under biopower—and thus, revealing their contingency—yet it seems to provide us

with no escape.

Interlocutors vary in their interpretations of Foucault with regards to the constitutive

determination of the subject, and thus, in their pessimism with regards to the possibilities for

freedom and resistance under biopower.69 I follow Oksala (2005) in her position that

dimensions of freedom are available in at least three different domains within Foucault’s

work, corresponding with the three different phases within his oeuvre. Within his 69 For an in depth review of the various readings of Foucault in terms of the determination of the subject by biopower and thus their capacity for freedom under it, see Oksala, 2005, pp. 118-121; Butler, 1997, pp. 92-94; Dreyfus & Rabinow, 1982, pp. 111; Gutting, 1989, pp. 1-3.

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archeological works—The Archeology of Knowledge (1969) and The Order of Things: An Archaeology

of the Human Sciences (1970)—Foucault identifies freedom not in the subject nor in her

characteristics, but in the generative possibilities of language, which necessarily produces an

excess of meaning. In The Archeology of Knowledge, Foucault explicitly states the discursive

“positivities” he is examining are

not so much limitations imposed on the initiative of subjects as the field in which

that initiative is articulated. . . . I have not denied—far from it—the possibility of

changing discourse: I have deprived the sovereignty of the subject of the exclusive

and instantaneous right to it (1969, p. 197).

Thus, while it many not be the kind of open-ended ideal posited within sovereign account of

power, freedom is nonetheless available to the subject at the level of language—even for

those subjects taken up and produced by scientific discourses, which, as regimes of truth,

epitomized the formalized discursive conditioning of thought for Foucault such that he

“questioned the possibility of saying something completely new” in this context (Oksala,

2005, p. 87). This is because, language—even scientific language—always “outruns the

subject, who can never completely master it” (Oksala, 2005, p. 10).

Similarly, freedom can be found within Foucault’s genealogical work at the level of

the lived body, because like language, experience also outruns the subject. Foucault claims

that “where there is power there is resistance” in The History of Sexuality, Volume One because

while meaning, normality, and intelligibility are all constituted by power, experience is not

wholly determined by it, but can exceed those norms (1990, p. 96). Indeed, we can have

experiences that transgress the boundary of the normal into the abnormal (such as

depression or homosexual desire), as well as those that transgress the limits of intelligibility.

This, argues Oksala, is why Foucault identifies “bodies and pleasures” as “the rallying point

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for counterattack against the deployment of sexuality,” rather than “sex desire” (Foucault,

1990a, p. 157):

The experiential body is a locus of resistance in the sense that it forms the spiral of

limits and transgressions. Power/knowledge inscribes the limits of normal

experiences, but it exactly the existence of these limits that makes their transgression

possible. The experiential body is constituted by power/knowledge network, but the

limits of its experiences can never be firmly set because they cannot ever be fully

determined and articulated. The experiential body can multiply, distort and overflow

the meanings, definitions and classifications that are attached to experiences, and in

this sense it is capable of discursively undefined and unintelligible pleasures, for

example. . . . In Foucault’s genealogy, as in his archeology, there is thus a dimension

of freedom in the sense of a constitutive outside to the discursive order, even though

there is no outside for the apparatus of cultural network of practices as a whole. If

language can never be totally mastered and brought within the discursive order,

neither can experience ever be wholly defined. It always remains contestable and

resistant to articulation (Oksala, 2005, p. 132).

Foucault’s historical understanding of ethics, as well as his prescriptive sense of

ethics in terms of “an attitude or way of life,” means both that a dimension of freedom is

available to the subject in the domain of ethics, and that the prescriptive claims I make here

can be justified as ethical without the constitution or privileging of new moral rules or

subjectivities (Oksala, 2005, p. 160). In this sense, what Foucault supplies us with is a shell or

framework for ethicality rather than a specific set of rules regarding how individuals should

be or should act. Indeed, it is in opposition to a moral code (or set of moral rules) and moral

behavior (or behavior in relation to the code), that Foucault defines ethics in terms of the

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relationship of oneself to the self, the process by which one forms oneself as an “ethical

subject (Foucault, 1990b, p. 28). Ethics thus entailed modes of acting on the self via

practices of the self that Foucault identified with the ancient principle of “epimeleia heautou”

or “care of the self” (Foucault, 1991, pp. 359-360). Further, freedom can be exercised in this

domain for Foucault via critically and self-reflexively engaging in practices of the self in ways

that stretch the limits of subjectivity and intelligibility – this is the form his normativity with

regards to ethics takes (counter to the claim Foucault’s work is “not normative”) (Taylor,

2009, 46).70 Foucault’s identification of ethicality with the critical and self-reflective

stretching of norms is the reason why there can be no concrete prescriptions in terms of

moral rules or behavior from within his account of ethics – as Dianna Taylor writes, “with

Foucault, we do not get certainty” (Taylor, 2009, 59). This is also the source of Foucault’s

controversial claims regarding ethics as an “arts” or “aesthetics” of existence, which he

describes in The Use of Pleasure as “those intentional and voluntary actions by which men not

only set themselves rules of conduct but also seek to transform themselves, to change

themselves in their singular being, and to make life into a oeuvre that carries certain aesthetic

values and meets certain stylistic criteria” (Foucault, 1990b, pp. 10-11). Oksala (2005) argues

that Foucault’s invocation of art or aesthetics in the context of ethics is due to art’s capacity

to transgress constitutive norms and veer beyond intelligibility (pp. 161-166). Ethics is the

space in which Foucault locates resistance to the “individualizing, yet totalizing”

normalization of biopower through

shaping one’s self and one’s lifestyle creatively: by exploring possibilities for new

forms of subjectivity, new fields of experiences, pleasures, relationships, modes of

living and thinking. It consists of creative activity as well as critical interrogation of 70 The argument that Foucault’s work is not normative or that normative claims are impossible within his account is a common one. See Taylor 2009.

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our present and contemporary field of possible experience. The quest for freedom in

Foucault’s late thought . . . becomes a question of developing forms of subjectivity

that are capable of functioning as resistance to the normalizing power. Ethics is a

practice that stretches the limits of the subject (Oksala, 2005, p. 168).

Thus, not only are dimensions of freedom possible for the Foucauldian subject at the

levels of language, the body, and relations of oneself to the self, they seem necessarily to be

available in some sense within the first two of these domains given the necessarily generative

and excessive nature of both language and lived experience. Further, if critical self-reflection

and creative engagement with practices of the self in order to explore/contest and further

the limits of subjective intelligibility is the form that freedom takes at the level of ethics, then

there is no reason to posit new moral rules or values beyond that of freedom itself. Ethical

medical practice, political theory, and activism, then, is that which enables or cultivates

freedom, in the form of the critical, self-reflective engagement with practices of the self, and

the proliferation of meaning at the level of language and of the body. This will require a

radical reconstruction of the bureaucratic structures via which gender is governed and life

chances are maldistributed among those who fail to meet norms of cisgendered function.

Indeed, in Normal Life, Spade (2011) argues that as we move away from a sovereign

conception of power to a more Foucauldian one, our focus shifts to the level of the

bureaucratic administration of power—the government of gender—and “become[s]

interested in the legal systems that distribute security and vulnerability at the population level

and sort the population into those whose lives are cultivated and those who are abandoned,

imprisoned, or extinguished” (137). Thus, after exploring the prescriptive claims which issue

from Foucault’s understanding of freedom in the following section, I turn in section III to

consider avenues for resistance in the aftermath of DSD, focusing on those often obfuscated

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forms of “administrative violence” via which life chances are maldistributed such that

cisgendered lives are made live, while gender variant ones are let die.

II. Ethical Medicine and Politics Under Biopower

A. Ethics

Ethical medical practice—or administration of medical knowledge/power according

to Foucault’s understanding of ethics in terms of the relation of oneself to the self—will be

medical practice that facilitates freedom in terms of care of the self. For those unable to

provide informed consent, this account justifies a moratorium on gender-confirming

normalization given that such practices seem to restrict the possible ways in which one can

relate to oneself (specifically, in gender variant ways). Indeed, one’s inability to provide

informed consent is in function of one’s inability to engage critically in such decisions or

practices, such that possibilities for taking up such practices in ways Foucault would describe

as ethical are foreclosed. For those who can provide informed consent, on the other hand,

and desire gender-confirmation, this account justifies the claim that they should not only

have access to it—both somatically and administratively—but that this access should be

timely and affordable given the harms we know to accrue to when access is withheld.71

Gender-confirming technologies can indeed function as practices of the self for individuals

71 For example, the GID subworkgroup explicitly acknowledged that the distress and dysphoria that trans* individuals experience correlates with access to care. Their only recommendation not adopted by the APA’s Board of Trustees—that the B criterion for the diagnosis be reworded to identify the conditions as associated with a “significantly increased risk of suffering, such as distress or disability”—is based on their consensus that many adolescent patients are not distressed as long as “a clear path towards gender change is mapped out for them, but may become strongly distressed if parents or others try to strongly block this path” (Zucker et al., 2013, p. 906). The distress and social impairment trans* individuals experience is relieved through somatic gender confirmation; this is the treatment for it as a pathology.

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that open up new possibilities for not only modes of relating to the self, but modes of

relating to others as well. As Butler (2004) writes in “Undiagnosing Gender,” it would be

ideal if insurance companies were swayed by claims that gender-confirmation

will allow someone to realize certain human possibilities that will help this life to

flourish, or . . . will allow someone to emerge from fear and shame and paralysis into

a situation of enhanced self-esteem and the ability to form close ties with others, or

that this transition will help to alleviate a sound of enormous suffering, or give reality

to a fundamental human desire to assume a bodily form that expresses a

fundamental sense of selfhood (p. 92).

One might question granting access to technologies of gender-confirmation to those

who desire it—even if they are able to provide informed consent—however, given that these

technologies emerge out of and are used within the context of biopower, and more

specifically, that of white supremacist heteropatriarchy. Indeed, one might argue—as many

feminists and non-feminists have—that both the normalizing technologies used to confirm

gender such as hormone administration or breast augmentation, and the desire for their use

are merely the products of problematic biopolitical norms. Forms of gender-confirming

normalization are thus technologies of domination via which clinicians strengthen

oppressive heternorms through their literal inscription upon the body. On this argument,

those who engage with these practices not only reify white supremacist and

heteropatriarchial norms, but they are also dupes, fully determined by the subjectivizing

deployment of cisgendered life as normal.72

72 Raymond (1994) is the most obvious exemplar of this position. However, Heyes (2007) argues that Hausman (1995) also succumbs to this picture, reductively defining the transsexual “tautologically, as the individual who accedes to the terms of the discourse that generated a particular subject position” (Heyes, 2007, p. 50). As a result, “both Raymond and Hausman’s analyses conspire to preclude the agential resistance on the part of transsexuals”

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Even if such practices can function as practices of domination, they can also

function as practices of the self, as the means by which individuals critically and creatively

explore the limits of subjectivity, of pleasure, and of relationality. Indeed, there can be

overlap between technologies or practices of the self and those of domination—in

“Technologies of the Self” (Rabinow, 1997), Foucault explicitly identifies the “encounter

between technologies of domination and [technologies] of the self” as “governmentality” (p.

225). However, technologies of the self, which he defines in this text as the ways in which

“individuals effect by their own means, or with the help of others, a certain number of

operations on their own bodies and souls, thoughts, conduct, and a way of being, so as to

transform themselves in order to attain a certain state of happiness, purity, wisdom,

perfection or immortality,” are not identical to, or mere reproductions or extensions of

technologies of domination (p. 225). Rather, what characterizes them as ethical is the mode

via which they are engaged; that is, one can engage gender-confirming technologies ethically

as technologies of the self if one does so creatively, investigatively, and critically. While this

does mean that ethicality requires certain kinds of cognitive engagement, this does not imply

that ethical engagement with the world is only cognitive or intellectual in nature – indeed,

ethicality often seems to require certain forms of affective and somatic engagements – or

that one need be particularly educated or “intellectual” in order to creatively, investigatively,

and critically engage gender-confirming practices of the self. This critical ethical attitude is

often prompted by one’s coming face-to-face with their own sex-gender (and the

fictitiousness of its unity) such that this ethical style is less likely to be generated when an

individual’s self-understanding fits neatly within systems of domination. Indeed, those

conditions that seem more likely to engender this kind of ethical relation of the self to the (p. 50). For more on this point, see Prosser (1998), Hale (1998),Whittle (2006), Riddell (2006).

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self are the same ones that deny trans* individuals the privileges accorded to cisgendered

ones, which make it easier to pursue one’s education – particularly to the high levels one

needs in order to be considered “intellectual”.

While it is indeed the case that some individuals may engage these gender-confirming

technologies in oppressive ways, there is no reason to presuppose this is the case in every, or

even the majority of cases. To argue that trans* individuals somehow merely re-instantiate or

re-inscribe gender norms through transition (including in those cases where one transitions

such that they pass) is to hold that trans* persons are somehow uniquely reducible to their

discursive and practical subjectivation as trans*. It is to uniquely deny trans* individuals the

capacity for critical self-reflection and, on that basis, deny them vital access to gender-

confirmation. We acknowledge that a cisgendered woman who chooses breast augmentation

can nonetheless be critical of the heteronorms against and through which that choice is

made. It is unclear why we should deny trans* persons that same capacity. Indeed, one could

argue the wealth of experiences forced upon trans* persons with regards to navigating and

transgressing gender norms are more likely to yield critical insights with regards to those

norms.73

In fact, I see the foreclosure of these kinds of problematic arguments that undermine

trans* access to gender-confirmation by denying the possibility for trans* resistance and

73 I recognize that the issue of cisgendered women’s use of medical practices that are gender-confirming for trans* individuals – such as breast augmentation – is complex. For example, there those who hold that cisgendered women do not and cannot autonomously choose breast augmentation, even if they may seem to be critical of this choice. Further, one might argue that my account paradoxically implies that medical forms of gender-confirming normalization (such as breast augmentation) should be restricted to those who engage such practices ethically (i.e. critically), such that the only people who should be able to access them are those who take them up reluctantly or guiltily. My point here is simply that we cannot restrict trans* individuals’ access to these practices based on the assumption that they are somehow uniquely duped by heteropatriarchy given that we do not restrict cisgendered individuals’ access in the same way.

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freedom under biopower, to be one of the positive features of Foucault’s understanding of

ethics and of the possibilities for the subject in the domains of language and the body. The

irreducibility of language and experience to the discursive and non-discursive elements

constitutive of sexed, gendered, and sexual subjects applies to all individuals constituted as

such. Indeed, everyone fails with regards to norms of sex, and gender, and sexuality—these

are the transgressions in which freedom and resistance may be found. As I suggested above,

given the greater experience a transwoman has with biopolitical binds produced by the

heterosexual matrix than as a cisgendered woman, she is likely epistemically privileged with

regards to critical insights into that system. Further, through transition, a transwoman will

come to occupy a significantly different epistemic position than a cisgendered woman with

regards to heteropatriarchy—even if her transition renders her “unreadable” as trans. While

transmisogyny and misogyny may emerge out of the same discourses and non-discursive

elements responsible for the government of populations as sexed, gendered, and sexual,

these are unique phenomena with differing political and material effects. If anything, my

account has greater ethical implications for those of us who are cisgendered—particularly

those who live most comfortable within the norms of the heterosexual matrix. Ethical

relation for Foucault is a relation of the self to the self, calling into question whether our

focus should be on the relation of others to themselves from the start. If anyone should bear

the burden of having to prove somehow that the technologies of the self they engage in are

not technologies of domination, but rather ethical practices of the self, it should be those

living within the norm and enjoying its relative privileges, and not those suffering most

under the weight of heteropatriarchical biopower.

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B. Language

Foucault’s understanding of freedom at the level of language justifies the jettisoning

of both the DSD system of nomenclature and the use of GD as a diagnosis within clinical

medicine. For Foucault, freedom is found in the generative excess of language – its

“formless, mute, unsignifying space” – which is more or less open to reinterpretation or the

accumulation of novel, diverse, and potentially contradictory meanings depending on its

mode (Foucault, 1994, p. 383). Scientific discourses, and the language deployed within them,

however, are – as regimes of truth – particularly intransigent to reformulation or change– so

much so that in the course of his discussion of Mendel in The Archaeology of Knowledge,

Foucault questioned the possibility of saying anything new in the context of scientific

discourse given their formalized and regulative nature (2007b, pp. 224-225). As I have

shown, their authoritativeness reifies problematic norms regarding sex, gender, and sexuality,

and strengthens both their discursive and non-discursive instantiation (for example, through

medical management practices) and problematic, homogenizing normative narratives about

those with pathologies of cisgendered function. Both require—as Butler (2004) writes of

GD—“that a life takes on a more or less definite shape over time,” and that “gender is a

relatively permanent phenomenon” (p. 81). Furthermore, as I illustrated in previous

chapters, while biomedical accounts of gender assume that it is in some way socially

mediated (though according to a non-interactionist, biosocial model in terms of brain

organization theory), it denies that one’s dysphoria or desire for gender confirmation may in

some way also be socially mediated. As Butler makes clear, one

would be ill-advised to say that you believe that the norms that govern what

is a recognizable and livable life are changeable, and that within your lifetime,

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new cultural efforts were made to broaden those norms, so that people like

yourself might well live within supportive communities as a transsexual, and

that it was precisely this shift in public norms, and the presence of a

supportive community, that allowed you to feel that transitioning had

become possible and desirable (2004, p. 81).

Retaining pathology—even strategically—strengthens norms about the subject with a DSD

or GD in terms of their life history, psychology, embodiment, and capacities for critical self-

reflection, autonomy, and resistance—including those arguments which position trans*

individuals as dupes of biopower mentioned above. This elides the possibility of

understanding “the demands of some transsexuals for [sex reassignment surgery] as

historical products with their own social logic, which in certain moments dovetails with the

demands of non-transsexuals” in the way that Butler highlights in the quote above (Heyes,

2007, p. 47). These norms contribute to the subjectivation of those with GD and DSD in

both senses of the term—subjectification and objectification—as well as all subjectivation of

all sexed and gendered subjects, insofar as they set the terms of our intelligibility. Those with

DSD and GD bear the brunt of this deployment of power as those lives that are let die

through the maldistribution of life chances. Further, these discourses can open up others—

such as family members of those with DSDs—to forms of subjectivization that are only

beginning to be explored in the literature (Feder, 2014). The most obvious example of this

comes from Davis’s (2011) work in which she argues that the re-articulation of intersex

conditions as DSDs reasserted medical authority over intersex bodies and their management,

on the basis of qualitative interview with intersex persons, their families, and clinical experts

in the field. She details the following anecdote provided by Dr. C., a physician who treats

intersex conditions, revealing the ways in which the diagnosis discursively facilitates the

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subjectification and objectification of the parents of a child with an intersex condition,

exposing them to forms of psychiatric normalization with regards to norms of sex and

gender:

Dr. C.: The father said, “[Doctor], can I ask you a question?” I said, “Absolutely, this

is your forum. I’m at your disposal. You’re hiring me.” He said. “Why should we do

anything?” And I acted physically surprised, I’m sure I did. And I said, “Well, I'm

concerned that if you raise this child in a male gender role without a straight penis,

he’s not going to see himself as most other males and he’s not going to certainly be

able to function as most other males.” And the father said, “Well, in our family we

like to celebrate our differences and not try to all be the same and feel the social

pressure to do everything like everyone else does.” . . . I said, I do have to say one

thing, and I think it’s of key importance that you both see a psychiatrist. (Davis, 176)

In this quote, we see the problematic norms about sex and gender discursively reified

through DSD function to justify submitting the parent of a child with a DSD to psychiatric

normalization. The parent’s assertion of a normal variant view of their child’s intersexed

body comes to mark them as “abnormal” and in need of treatment. In this way, the

problematic norms strengthened by the pathologization of gender-variant lives constitutes a

form of epistemic injustice—the brunt of which is, once again, borne by those with intersex

conditions and GD. In her 2007 book Epistemic Injustice: Power and the Ethics of Knowing,

Miranda Fricker identifies the structural biasing of our collective hermeneutical resources as

hermeneutical injustice, insofar as it can lead to “having some significant area of one’s social

experience obscured from collective understanding” (p. 154). She argues that our

understanding of our social experiences is a “sphere of epistemic activity” wherein relations

of identity and power can engender a particular kind of epistemic injustice, such that some

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social groups are rendered unable to dissent from distorted interpretations of their social

experiences (p. viii). In order to illustrate this point, Fricker points to womens’ experiences

of sexual harassment prior to the consolidation of the concept of sexual harassment as an

example of how “extant hermeneutical resources can have a lacuna where the name of a

distinctive social experience should be” (pp. 150-151). This lacuna results from a group’s

hermeneutical marginalization; their sociopolitical inequality leads to their unequal

hermeneutical participation such that they lack the resources to render intelligible

experiences that it may be in their best interest to communicate or understand. Because our

“interpretative efforts are naturally geared to interests,” lacunae in our collective

hermeneutical resources are most likely to obscure those experiences of which, as Fricker

writes, “the powerful have no interest in achieving a proper interpretation, perhaps indeed

where they have a positive interest in sustaining the extant misinterpretation,” rendering

these resources structurally prejudiced (p. 163, 152).

Fricker argues that the primary harm of hermeneutical injustice issues can be

understood in two ways, depending on what the hermeneutical lacuna renders unintelligible.

The first type of harm she identifies is “situated hermeneutical inequality” referring to “the

concrete situation in which the subject is rendered unable to make communicatively

intelligible something which it is particularly in his or her best interests to be able to render

intelligible” (p. 162). This is the case of the victim of sexual harassment being unable to

communicate intelligibly her workplace experiences as sexual harassment to herself and

others, unable to dissent from those dominant interpretive frameworks which position the

behaviour she has experienced as merely “flirting.” The second type of primary harm Fricker

details but does not label, is what I call constitutive hermeneutical inequality, referring to the effect

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these lacunae in our hermeneutical resources can have on one’s understanding of their social

identity (see esp. pp. 162-169).

What is interesting about Fricker’s view is that it points to the way in which our

collective hermeneutical resources are constitutive of our understandings of not only our

social experiences/ interactions, but of our social identities themselves. Hermeneutical

marginalization renders both dominant and authoritative certain constructions of identity

that can have constitutive effects on the subject’s lived experiences. Fricker highlights the

constitutive effects of discourse on both the individual’s social identity, and on how they

experience that which is identified as the cause of their identity. Fricker, however, is writing

within an analytic tradition of social epistemology. Thus, while our ways of relating to the

self are socially constituted for Fricker, they are more repressive than constrictive on her

account, or deductive rather than productive. Further, Fricker focuses solely on discourse, in

the same way Foucault does in his archaeology. However, incorporating Fricker’s insights

with Foucault’s more expansive account of the constitution of subjects—especially with

regards to regimes of truth like scientific and medical discourse—we can appreciate some of

ways in which such discourses constrict the horizon of intelligible experiences, and of ways

of relating oneself to the self, such that those taken up by them are epistemically harmed.

Consider, for example, dominant discourses regarding fatness, which have medical

dimensions, but are less firmly rooted within the realm of medico-scientific discourse than

DSD and GD.74 These discourses bias our hermeneutical resources such that a fat woman

74 Indeed, though obesity is a diagnosis—and from which we are apparently suffering an epidemic—I would argue that fat has not quite completed the trajectory from sin to sickness in the way things like homosexuality or mental illness have historically (though, of course, to greater and lesser degrees). Indeed, I would argue that the existence of television shows like The Biggest Loser are evidence that fatness is not quite yet primarily a pathology; if fatness were a first and foremost a disease (obesity), weight-loss focused game shows would seem unsavory in the way a weight-gain focused game show for anorexics does.

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may come to count socially as lazy and weak-willed even if she is not and further, she may

come to experience herself that way—her purportedly undisciplined appetite coming to exist

for her as shameful or grotesque.75 Furthermore, these discourses about fat have serious

effects for the embodiment of fat and non-fat women alike. Not only do many women

experience their bodies as shameful, necessarily undesirable, and uncomfortable, but further,

studies have shown that these discourses can skew a woman’s proprioception of their body,

such that they believe they are bigger than they actually are and take up more space than they

actually do (Young, 1980; Grogan 2007). Moreover, insofar as these discourses posit the

truth about both the fat woman’s body (as revolting), and of her experience of her body (as

revolting), they allow us to claim that those who experience their bodies otherwise are in bad

faith, a constitutive hermeneutical injustice or harm. This is what allows us to gaslight the fat

activist when she claims to love her body and experiences it as beautiful and capable with the

argument that while she might say that, we all know that—underneath it all—she’d really

rather be thin. This is the power of our dominant discourses about fat, which in virtue of

their failure to congregate primarily in the realm of the medico-scientific, should theoretically

be more open to the proliferation of meaning than GD and DSD as pathologies.

The jettisoning of GD and DSD as pathologies will merely serve to further unmoor

sex, gender, and sexuality from the realm of medico-scientific regimes of truth. While I do

not want to underestimate the effect this discursive shift could have, it is clearly insufficient

for bringing about the kind of changes many desire at level of medical practices and the way

in which they take up those with intersex conditions and those with GD. Most importantly,

in the absence of GD, it seems unclear how we justify affordable or timely access to care. 75 My focus specifically on women here is not meant to imply that norms about fat do not also effect the subjectivization of those who are not women. I focus on them exclusively here, however, because norms about fat are inextricable from heterosexist norms of desire such that women currently suffer more with regards to them than non-women.

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If it is the case, however, that the attribution of pathology is basic to flourishing as an

embodied subject, then this is because our current configuration of disciplinary institutions

responsible for the administration of medical knowledge/power renders it as such. Once we

analyze the quandary of autonomy posed by pathology for those with GD and DSDs in

terms of the larger biopolitical management of gendered populations, our attention turns to

the administrative structures that make the maldistribution of life chances possible through

these kinds of double binds. This is why I argue in the following section that the radical

restructuring of institutions responsible for the maldistribution of life chances should be a

target for theoretical resistance post-Intersex/DSD. Rather than attempting to navigate

strategically the dominant discourses and non-discursive elements that together enact the

government of gender, let us disrupt these discourses and non-discursive elements directly,

and shift the terrain of their demands. Foucault’s understanding of freedom at the level of

the body only further justifies access to gender confirmation for those capable of providing

informed consent and the jettisoning of the DSD nomenclature and GD as pathologies.

C. The Body

If freedom and possibilities for resistance are located for the Foucauldian subject

within the experiential body under biopower, what does this mean for those with intersex

conditions and with GD as pathologies of cisgendered function? It further justifies a

moratorium on the use of medical efforts to produce cis-gendered lives for those unable to

provide informed consent, and access to gender-confirming normalization for those who

cannot. Like language, experience outruns the subject, but even this excess—its capacity for

transgression in terms of normal/abnormal or intelligible/unintelligible—is constituted in

relation to discursively and non-discursively constituted norms. Freedom, then, can be found

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in the proliferation of the possibilities for meaning, both discursively and experientially. Such

possibilities are constricted through the use of normalizing efforts on both intersex and

trans* children via sexual normalizing surgeries, fetal dex, and treatments like GICE, insofar

as they attempt to close off particular (re-)interpretations or meanings. Furthermore, this

account of resistance generated via bodily experience implies that those surgeries performed

on intersexed infants that compromise their genital sensation (and thus certain forms of

sexual experiences), also compromise their access to certain avenues of resistance, and in a

potentially significant manner. Sexual experience, of course, exceeds the specific experiences

of genital pleasures or orgasm, and non-genital pleasures might take on a plethora of new

meanings in the absence of the capacity for genital pleasure that would themselves transgress

norms of sexual experiences in terms of both normality and intelligibility, and thus, count as

forms of resistance. Additionally, the failure to experience is itself a kind of bodily

experience that necessarily problematizes these norms. However, insofar as such surgeries do

result in the incapacity for certain forms or modes of sexual experience, it would also limit

avenues for bodily resistance constituted in relation to them, particularly in those cases

where individuals are left anorgasmic. Thus, medical efforts to secure cisgendered futures

constrict the horizon of possibilities for bodily discursive and experiential meaning. Where

intersex infants treated with sensation-impairing surgical normalization are concerned, these

efforts further seem permanently to foreclose one’s capacities for certain types of sexual

experiences and thus, certain experiential avenues for resistance.

This account of bodily-generated resistance via experience can also justify ensuring

timely and affordable access to gender-confirmation for those who desire it. For many trans*

individuals, gender-confirmation enables the positive re-articulation of the meaning and their

experiences of their bodies. Further, it enables the proliferation of meanings insofar as for

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many individuals it enables the expansion of one’s social world—indeed, social impairment is

one of the terms upon which GD is defined. Meaning and experience are cultivated

relationally. Insofar as gender-confirmation expands the horizon for relational possibilities, it

can also expand the horizon of possibilities with regards to the generation of discursive

meaning.

My justification here seems to place those forms of normalization accessed by trans*

persons to confirm their gender on a continuum with other forms of gender-confirmation

accessed by cigendered persons such as breast augmentation, breast reduction, penile

enhancement—or any one of a plethora of gendered “cosmetic” interventions—rendering

us, apparently, unable to distinguish between them in terms of “medical necessity.” I counter

that such distinctions are still possible, through appeal to the very deployments of power that

produce such technologies as gender-confirming. Individuals who more closely approximate

norms of sex, gender and sexuality have more privilege within the system of heteropatriarchy

than those who don’t. For example, beautiful women make more money than homely

women, while fat employees are less likely to be promoted than thin ones (Hamermesh,

2013; Puhl & Brownell, 2012). However, those living along the limits of these norms bear

the brunt of our systems of oppression far more harshly than those still intelligible within the

realm of the “normal.” It may be the same system of heteropatriarchal norms that constrict

the horizon of possibilities for meaning that compel both a cisgendered woman and a MTF

transwoman to increase the size of her breasts, believing that her future autonomy (be it

materially, psychologically, etc.) depends on this intervention. The cisgendered woman’s

failure to obtain breast augmentation would not constitute her as pathological with regards

to cisgendered function, however, in the sense that it would not mark her life as one to be let

die under biopower; it would not expose her to disproportionately high risks of poverty or

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physical or sexual violence or murder; it would not open her up to the bureaucratic

maldistribution of life chances suffered by trans* individuals and exacerbated by their lack of

access to gender confirmation. In this way, it is still possible to ground the medical necessity

of such interventions for trans* persons. For better or worse, the current configuration of

biopower under which (and through which) we live, gender is central to subjectivity such

that gender is a necessary component to personhood. There are, of course, those who “live

the line,” who disproportionately shoulder the burdens of heteropatriarchy while at the same

time resisting those norms through their lived existence, contributing to the proliferation of

meaning about sex, gender, and sexuality that expands the horizon of possibilities for all

subjects. However, we cannot demand trans* individuals to disproportionately shoulder

those burdens of abnormal—and unintelligible—living by withholding access to gender-

confirmation in exchange for an exclusive focus on dismantling those oppressive norms and

structures that make it (and the desire for it) possible.

If we accept that freedom is available to the Foucauldian subject in the context of

biopower, what does this imply for politics in terms of effectively resisting the oppression of

those with pathologies of cisgendered function? If freedom is found in language and in the

body through the proliferation of meaning and experience, spiraling between transgression

and the limit in a way that “no simple infraction can exhaust,” we must find our targets in

those discursive and non-discursive elements like institutions and practices that stifle that

proliferation of meaning, that dance between the normal and the abnormal, the intelligible

and the unintelligible. If freedom in the domain of ethics is found in the critical and creative

engagement with practices of the self to shape one’s self and one’s life, and to explore new

“forms of subjectivity, fields of experiences, pleasures, relationships, modes of living and

thinking,” then we must target those elements that constrict these kind of practices and

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modes of living (Oksala, 2005, p. 168). The first and most obvious target that appears upon

this reframing in terms of political goals are those entangled networks of public and private

bureaucratic institutions responsible for the administration of medical knowledge/power

including (but not limited to) hospitals, insurance providers, pharmaceutical companies, and

clinical research institutions. These networks, as well as the discourses they generate and

upon which they justify their actions, are primary contributors to the maldistribution of life

chances for those with intersex conditions and GD. Indeed, the maldistribution of life

chances for those with intersex conditions via health care administration seems to be one of

the targets of those who strategically endorsed DSD and subsequent repathologization in

order to surmount obstacles to competent care (Dreger & Herndon, 2009; Feder, 2014).

Though these authors fail to make the nature of these obstacles explicit, anecdotally I have

been told they are referencing two things: 1) limitations placed on accessing care (particularly

specialist care) by private insurance companies in the United States and 2) adult patients’

inability to find non-pediatric specialists trained in managing their unique condition due to

the stereotype that intersex conditions are problems “fixed” in childhood. The hope was that

the disorder language would make insurance companies more permissive in terms of

accessing care and would make non-pediatric specialists take treating (and learning to treat)

these patients more seriously.

I have not been able to find any evidence on whether DSD has been successful in

terms of decreasing insurance company restrictions on accessing care, though the emergence

of the Journal of Pediatric Urology as the primary site of clinical literature on intersex

management indicates the stereotype of DSDs being uniquely pediatric issues remains. More

importantly, however, this attempt by DSD endorsers strategically to navigate the

bureaucratic administration of knowledge/power underscores two of my claims: that

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obstacles to care are generated by governmental networks such that the networks themselves

should serve as our theoretical and activist targets; and that such initiatives must be local and

contextual in light of the way these bureaucracies function. The political work undertaken

and the forms of restructuring required to achieve goals like ensuring access to gender-

confirmation for those who can consent will necessarily differ between an American and

Canadian context given their differing forms of health care systems (i.e. for-profit vs. public).

This calls into question the appropriateness of adopting treatment models, as well as activist

or theoretical strategies, created specifically to function within (or around) the American

administration of health care beyond its borders. The United States is one of the only

developed nations with a for-profit health care system, in which insurance coverage is tied to

employment and there is a capitalist incentive to deny care, which makes the bureaucratic

challenges it generates quite distinctive.

The administrative systems that produce and implement oppression and

maldistribute life choices have their own unique histories and function in their own complex

ways. Because of this, theory and activism to resist these forms of what Spade (2011) calls

administrative violence will need to be particular and local in ways that acknowledge their

histories, as well as their function within biopower to render certain lives unliveable. In the

following section, I consider some concrete forms of administrative violence experienced by

not only trans* but also intersex persons that contribute to the maldistribution of life

chances for them as individuals without cisgendered lives.

III. Administrative Violence and the Government of Gender

Not only do many of the various agencies and institutions that issue identity

documents require surgical transition in order to change one’s gender identification, but,

further, inconsistent policies among these various agencies mean there are often

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discrepancies between the various forms of ID one might hold (i.e. birth certificates, driver’s

licenses, social security cards, etc). Identity documents that misidentify an individual’s gender

or discrepancies between identifying documents serve as a significant barrier to employment

and can identify or “out” an individual as trans*, making them vulnerable to discrimination.

Furthermore, Spade (2011) points out that those with identity documents that do not match

their appearance or conflict in some way face heightened vulnerability with police and other

public officials, when traveling, or even when attempting to do basic things like enter age-

barred venues or buy age-barred products, or confirm identity for purposes of cashing a

cheque or using a credit card or a public benefits card (p. 146). As a result,“conflicting

identity information can make it difficult to obtain certain identity documents that are vitally

necessary for day-to-day survival” (p. 146).

Further, Spade identifies gender mis-classification or inconsistent gender

classification is a significant problem for trans* individuals accessing many services,

institutions and public spaces like drug treatment programs, homeless and domestic violence

shelters, foster care group homes and hospitals, and bathrooms because they are often

structured around sex-segregation. Spade notes that trans* individuals “face significant

vulnerability to violence in those spaces, especially in institutions that cannot be avoided

because of their mandatory nature” (p. 147).

In the previous chapter I pointed out that the APA’s failure to issue Practice

Guidelines for the treatment of GD renders their primary argument for the retention of the

diagnosis in DSM-V—maintaining access to care—moot. Spade identifies the way in which

gender classification functions to administratively restrict access to care, insofar as most

State Medicaid policies and health insurance programs actually deny individuals access to

“gender-confirming” services if they are being sought specifically to confirm gender. That is,

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as Spade writes, “medicaid provides all of the gender-confirming procedures and

medications [e.g. breast reduction or augmentation, hormone therapy, vaginoplasty] that

trans people request to nontrans people and only denies them to those seeking them based

on a transgender diagnostic profile” or specifically to treat GID (p. 149).76 The same is true

in the two Canadian provinces that refuse to cover gender-confirming interventions for

those with GD—New Brunswick and Prince Edward Island—yet will cover them for other

patients (including those with DSDs). As Spade notes, “the impact of this denial can have

significant mental and physical health consequences for trans* individuals (p. 149).

These administrative harms enacted upon trans* individuals similarly threaten the

lives of those with intersex conditions as persons who fail to conform to bureaucratic

demands regarding gender categorization. This is one of the reasons why legal scholar Julie

Greenberg argues, in her 2012 book Intersexuality and the Law: Why Sex Matters, that there will

be an increase in the number of legal cases involving intersex individuals. She writes that

given that many lawmakers do not understand the difference between being trans* and being

intersex, rules and policies created for trans* people will likely apply to both (p. 107).

Furthermore, Greenberg cites anecdotal evidence from an interview with AIC director Anne

Tamar-Mattis who states that that problems are already arising for intersex individuals “with

identity documents (including birth certificates and passports) and insurance coverage” (p.

108):

We are seeing more cases where intersex people trying to change their identity

documents are being caught in a net that was developed to stop transsexuals from 76A possible consequence of the inclusion of DSD as a method of subcategorizing those with Gender Dysphoria (GD) in DSM-V is that individuals with DSDs who seek gender-confirming treatments through a GID diagnosis may find themselves subject to the same denial of care experienced by trans* individuals. If they do not, the divide between those GD patients with a DSD and those without will be equivalent to those GD patients the state considers to have a legitimate claim to medical care and those it does not.

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amending their documents. In the past, many intersex people who needed to change

identity documents were able to do so under the “clerical error” provisions of state

regulations governing birth certificates. Typically, a doctor’s letter stating that a

mistake was made would be required, but many clerks would accept these physician

statements at face value and amend the sex indicator on the birth certificate. Now

that many states have adopted written procedures for addressing transsexuals’ birth

certificate amendment requests, bureaucrats automatically turn to those rules no

matter how inappropriate or inapplicable they may be (Tamar-Mattis, as cited in

Greenberg, 2012, p. 109).

Furthermore, the surgical requirements bureaucratically imposed upon trans*

individuals may similarly be applied to the intersex, and are themselves, I argue, an artifact of

the assumption reified within the DSD treatment model that in order to be a man or a

woman, one must have the unambiguous body of a man or a woman (recall Amundson’s

privileging of a particular mode of function). Spade (2011), however, notes that the vast

majority of trans* people do not undergo surgery, both because it is prohibitively expensive

and because they do not want it or need it, citing a 2009 study which found that 80% of

transgender women and 98% of transgendered men have not undergone genital surgery (p.

145). This, he writes identifies “the common misperception that surgery is the hallmark of

trans experience” as particularly harmful to those “populations disproportionately lacking

access to medical care, including low-income people, people of color, immigrants, and

youth” (p. 145). I would further add that the assumption of a necessary coherence between

bodily sex and gender is also particularly harmful socially insofar as it reinforces a particular

narrative regarding who is and can be a “normal man or woman” and who isn’t or cannot.

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The administrative violence enacted upon intersex and trans* persons via sex

categorization renders it a useful and important target of activist theory and resistance.

However, rather than argue for the introduction of additional methods or types of sex

categorization like Germany’s inclusion of a blank space option, I suggest we challenge the

importance of sex categorization in these kinds of administrative contexts. The ubiquity with

which we are forced to identify ourselves in terms of sex and/or gender naturalizes the

demand for us. However, these systems of bureaucratic sorting have histories. If the

elimination of sex/gender categories on government documents seems too unthinkable, I

think it is worth questioning, at the very least, the state’s interest in determining sex or

gender. Why it is that people are not able to self-identify with regards to sex or gender as

they see fit? Why does the state need to determine an individual’s sex? As Greenberg (2012)

points out, despite intersex individuals appearing in the historical records from all eras, “legal

institutions did not begin to wrestle seriously with this issue until the 1970s” when sex

reassignment surgery became more widely available (p. 48). Furthermore, Greenberg points

out that given that majority of sex-based laws have been deemed unconstitutional in North

America and Europe, a person’s legal sex, is ironically “less important now than it has been

at any other time in history,” despite the fact that we call upon the state to determine an

individual’s legal sex more than ever before (p. 48). In fact, Greenberg argues there are only

“two significant areas” where governmental distinctions based on sex remain in the United

States: military rights and obligations (p. 48).77

The argument that the state paternalistically needs to determine a trans* or intersex

person’s legal sex in order to identify which gendered spaces they can enter (e.g. prisons)

77 This included marriage until the Supreme Court’s ruling on June 26, 2015 in the case of Obergefell v. Hodges that marriage is a fundamental right guaranteed to all citizens, rendering same-sex marriage legal nationally (Obergefell v. Hodges, 2015).

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assumes these individuals do not have the authority to determine, nor the capacity to know,

their own gender—assumptions that we grant to cisgendered persons. It assumes they may

be wrong in their self-identification, and that gendered sorting of this kind is necessary more

generally. Challenging state interest in categorizing the population with regards to

sex/gender is a necessary part of resisting the oppression of those with pathologies of

cisgendered function. Even if a moratorium were placed on medically unnecessary

interventions for those intersex patients unable to consent, the forms of administrative

obstacles that work to make trans* and intersex lives unlivable would still exist. That is,

those policies and rules which govern trans* lives and expose them to vulnerability would

continue to capture those with intersex conditions. As Greenberg writes, even with a

moratorium on surgery,

Those with atypical genitalia may be subject to challenges regarding their legal sex

and thus may experience discriminatory practices similar to those experienced by

trans individuals regarding the ability to marry in their self-identified gender, their

ability to change their I.D., access to housing and facilities such as prisons in

accordance with their self-defined identity and protection from discrimination on the

basis of their status as intersex (p. 108).

This isn’t to say that we should not ever categorize or sort individuals in terms of sex

and gender: indeed, there are circumstances in which state or medical sorting of the

population in this way is not only appropriate, but vitally important. For example, in order to

be effective, state initiatives aimed at the reduction of domestic violence within the

population need to take into account gender differences in that phenomenon. Furthermore,

contemporary medicine is filled with examples of the kind of disparities in both medical care

and knowledge production that can arise when sex/gender is not considered. A primary

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example of this is the differential symptoms of heart attack exhibited by patients with

typically-female versus typically-male bodies and the effects that failure to account for or

study these differences have had for the latter patients in terms of higher rates of

misdiagnosis and compromised access to care. Rather, my goal is to challenge state and

medical interest in sex/gender categorization in itself, as a default, and argue that such

sorting must be justified in terms of its capacity to facilitate freedom. In some cases, this

justification may be more clear than it is in others, and may already have a powerful feminist

history: sorting populations by gender when studying and generating initiatives to reduce

domestic violence is justifiable insofar it is a gendered phenomena.78 Not including gender as

an axis of analysis would misrepresent that which it is in our interests to most accurately

capture insofar as effective initiatives aimed at the reduction of domestic violence facilitate

freedom.

Acknowledging particular social, political, economic, or even biological phenomena

to be in some way sexed or gendered—such that sorting populations via sex or gender can

facilitate freedom—does not require one that lapse into a new (or perhaps old) form of

determinism with regards to sexed or gendered kinds. One might charge that the existence of 78 I realize there’s a lot of further discussion to be had here on the mechanisms of justification for this kind of sorting—potentially many pages worth. To say that this kind of sorting, or the justifications for this kind of sorting, may be clear in certain cases than in others is not to imply that this sorting is in any way self-evident or easy. There are many conditions of possibility for this kind of sorting; for example, the notion that violence against women is a distinct phenomena or category is the result of many years of political struggle. Further, to use an earlier example, the study of sexual harassment in the workplace—also a gendered phenomena—requires the emergence of an understanding of sexual harassment as distinct from “flirting,” as well as the establishment of it as a political problem to be addressed. Beyond this, there are many ways in which we can draw the boundaries of a population and reasons (political, or otherwise) for which we might want to configure or re-configure those boundaries. For example, when attempting to address violence against women, we may want to study the violence suffered by transgendered women separately from that suffered by transwomen in order to better capture and combat uniquely devastating effects of trans-misogyny. For discussion of the political sorting of populations that is beyond the scope of this text, see Spade, 2011 and Heyes, 2000.

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sexed differences with regards to those symptoms of heart attack experienced by typically-

female versus typically-male persons in particular, attests to the biological existence of

something uniquely male or female; doesn’t my granting this lead me into the trap of positing

some kind pre-discursive, or otherwise exterior to power, sex? I grant that sexual (and

gender) differences exist—and that these differences can indeed be vitally important for

emancipatory projects and practices of freedom. However, I deny the existence of sex and

gender beyond sex and gendered effects. That is, I deny the existence of sex—and

subsequently, of gender, as that onto which Money strategically displaced the binary of sex—

in terms of its agency, its causality, its unity. That women disproportionately suffer domestic

violence is not a product or function of their “womanness,” but rather of the

heteropatrichical conditions of biopower within and against which they are constituted as

women. Further, that typically female-bodied individuals exhibit different heart attack

symptoms than typically male-bodied ones does not speak to the existence of a pre-

discursive, biological male or female kind, let alone one from which gender and sexuality

causally issue. Those with typically female bodies can exhibit “female-typical” symptoms of

heart attack more or less typically; this would not make their symptoms pathological, merely

atypical. Further, the level of phenotypic variation and functional integration exhibited by

complex organisms like humans renders it unscientific in the most conventional sense of that

term to assume the unlikely level of uniformity that the assumption of biological male or

female kinds require, at least in the absence of overwhelming, reliable evidence. Moreover,

those with typically-female bodies can inhabit a variety of genders and sexualities, more or

less stably. Allowing that the sorting of populations in terms of things like sex and gender

can facilitate freedom does not demand the positing of some pre-discursive, biological, or

natural sex or gender.

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IV. Conclusion

In this final chapter I argued for the imposition of a permanent moratorium on

medical efforts to normalize the gender of those unable to provide informed consent—

efforts that by default aim within our current biopolitical context at the production of

cisgendered lives and the elimination of visibly transgendered lives. From within a

Foucauldian framework, I provided additional arguments justifying my two main prescriptive

claims. Freedom is not a right nor a characteristic of the subject for Foucault, but is rather

found in the proliferation of discursive meaning; the lived experiences of the body

irreducible to the discursive and non-discursive constitution of the subject; and the ethical,

critical, engagement in relations of oneself to the self, enabled by practices of the self. This

understanding of freedom reorients the focus of our political efforts to those concrete ways

in which life chances are maldistributed to render the lives of those with pathologies of

cisgendered function unliveable. Rather than deploying new medico-scientific discourses in

the hopes of restructuring institutional practices in ways that facilitate freedom, I argue that

we should focus our attention and effects on the local concrete ways in which those with

pathologies of cisgendered function are let die under biopower. If we want to change the

biopolitical management of this population, our approach must engage with this

management directly and explicitly as such, in the full grip of its history.

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Conclusion

In this dissertation I argued that where intersex conditions are concerned, it is both

theoretically and practically impossible to separate cultural issues of gender and identity from

medical issues of pathology—even if it might seem politically useful or desirable—in at least

three different senses. First, in the context of intersex management, health—as the absence

of pathology—is defined specifically in terms of gender and identity, such that these things

cannot be unentangled. The tripartite constellation of sex, gender, and sexuality is the line

along which both the intersexed patient and the trans* patient follow the homosexual in

their constitution as abnormal. As pathologies of cisgendered function, intersex conditions

may indeed be issues of “stigma and trauma,” but they are also, along with GD, necessarily

about gender—even if the majority of individuals with them identify as “perfectly ordinary

heterosexual, non-trans men and women” (Koyama, 2006, para. 22). Because of this

necessary tie to the heterosexual matrix and its transgression, intersex conditions and GD are

always already queer, such that reformulating the former in terms of disorder cannot dispel

the specter of queerness that has come to haunt it.

Second, pathology in itself is a kind of queerness with regards to biopower, such that

bringing intersex bodies more concretely into the realm of the pathological is not to displace

them simultaneously from queerness. In Crip Theory: Cultural Signs of Queerness and Disability,

Robert McRuer (2006) underlines the inextricable entanglement of queerness—specifically in

terms of homosexuality—and disability. Both are generated through the deployment of

biopower (specifically in the context of the clinic), such that the disabled subject and the

homosexual subject (and the intersexed and the trans* subject) share conditions of

possibility for their constitution as such. Indeed, pathology is one of, if not the, primary way

in which “biological-type caesura[s]” are introduced into the biological continuum

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constituted by life under biopower for Foucault. It is the way in which biological races are

constituted such that a differentiation can be made between those lives which should be

made live and those which should be let die when every human is alive in the context of a

power over “life itself” (Foucault, 2003, pp. 255-256). This claim underlies McRuer’s (2006)

that “the system of compulsory able-bodiedness, which in a sense produces disability, is

thoroughly interwoven with the system of compulsory heterosexuality that produces

queerness” (p. 2). Intersex and trans* lives are queered through their pathologization with

regards to sex and gender; however, pathology is in itself a queerness under biopower.

Hence, McRuer’s comment in his Afterword to Morgan Holmes’s 2009 edited collection

Critical Intersex that the “pitting of queer theory and activism as against [emphasis in original]

disability theory and activism [in the move to DSD] is paradoxical indeed” (pp. 247-248).

Finally, it is impossible to separate issues of gender and identity from those of health

and pathology if the goal is to somehow divide the natural from the social or the cultural.

Medicine, as well as its objects of surveillance and intervention, are necessarily, always

already natural and cultural—permanently intermingled instantiations of nature-culture.

Certain pathologies are merely more obvious in their cultural constitution than others.

For these reasons, I argued that any theory and activism grounded on the separation of these

issues—like the strategic endorsement of the DSD nomenclature—both is and was, always

already, doomed to failure. It not only assumes the problematic binary logic of

nature/culture, but is committed to a woefully inadequate account of power as sovereign,

which both misrepresents the productive ways in which biopower functions, and obscures

the historical constitution of its objects (including the subject). A good deal of the work this

dissertation accomplishes is a kind of theoretical ground-clearing—an in-depth elaboration

and exploration of particular histories and arguments—specifically, those that turn on

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pathology and/or brain organization theory, in order to make clear what will not work

regarding intersex conditions and GD. Further, the prescriptive claims that I’ve defended in

this dissertation are likely to be accepted by many (at least, many in the field of intersex

studies). My goal is to make this acceptance more sincere by revealing the terrain out of and

upon which medical efforts to secure cisgendered futures for intersex and trans* children

unable to provide informed consent are practiced, such that this acceptance actually impacts

practice. Indeed, one of the quandaries of intersex management in particular is the

persistence of these practices despite multiple decades of critical theory and activism which,

unlike the clinical practices themselves, draw upon evidence regarding the potential harms

associated with these interventions in order to justify their call for a moratorium. As a

cisgendered philosopher with formal training in the medical sciences, I draw together a

variety of literatures in order to unearth what lies between those claims we seem to agree on

and our actions, and reveal it in its problematicity. Famously, Foucault claimed that “[p]eople

know what they do; they frequently know why they do what they do; but what they don't

know is what what they do does” (Dreyfus & Rabinow, 1982, p. 187). I would argue that

where the management of intersex and trans* children is concerned, while it may be clear

what they do, it is actually not clear to many engaged in the administration of these

“treatments”—from clinicians to proxy decision-makers—either why they do what they do,

or what what they do does. In corralling the various ways in which invested parties talk and

think about intersex and trans* management practices, I not only reveal the fissures,

disconnects, and misrepresentations between them, I also reveal the origin of these

incoherencies to be the fictitious unity of sex itself, and the historical deployment of

sexuality as a field of normalizing medical knowledge/power. Thus, I seek to lay bare both

what these practices do, and why they are done in order to facilitate the constitution of a

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context in which we might more easily translate those claims we seem to accept—that

medical efforts to secure cisgendered futures for those unable to provide informed consent

need to stop and that those who desire gender-confirming normalization should get it – into

practice. In doing so, I hope to have positioned myself as a queer ally to intersex and trans*

people, by providing an analysis that might help to make the context in which they receive or

are denied medical care more humane.

McRuer (2009) draws upon Jacques Derrida’s late dialogue on “Unforeseeable

Freedom,” to think about “spaces of intersexual futurity”(p. 235). McRuer summarizes

Derrida’s contemplation on the “future-to-come,” in which one comes who “does not yet

have a recognizable figure” and thus cannot be defined via historically and potentially

exclusionary terms of likeness and difference (Derrida & Roudinesco, 2004, p. 52; as cited in

McRuer, 2009, p. 245). The “always-anticipated figure” of the “future-to-come” necessarily

“exceeds any determinism” for Derrida, for with determinism “there is no future” (pp. 52-

53; as cited in McRuer, 2009, p. 245). Thus, writes McRuer “[t]he unforeseeable freedom

that will arrive in a future-to-come, in other words, depends upon a relinquishment of

determinism, which in turn allows us to risk welcoming the unexpected” (p. 245).

Determinism, of course, can never fully be relinquished; there is no outside of

power, no outside of those discursive and non-discursive elements through which power is

deployed and the subject is constituted. Nonetheless, there is a beyond power—one

constituted by the irreducibility of life to power, by its necessary excess. This might not be a

space of freedom, but a space for it, that can be cultivated and creatively explored. In this

sense, I argue that one might read the kind of freedom I have articulated in terms of taking

the risk of “welcoming the unexpected,” of cultivating an openness to and opportunities for

that which exceeds, if not any determinism, than simple determinism. Dancing the unending

299

spiral between limit and transgression, normal and the abnormal, intelligible and

unintelligible is a risk—and one with potentially deadly consequences, as many trans*

persons of colour are intimately aware. The goal, then, is to hew out space for the taking of

such risks “for exploring possibilities for new forms of subjectivity, new fields of

experiences, pleasures, relationships, modes of living and thinking” (Oksala, 2005, p. 168).

This, I argue, must begin by understanding and targetting those biopolitical discourses,

regimes of truth, institutions, and practices which not only foreclose the capacity to taks

such risks, but render them so terribly grave.

300

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Appendix A Common Intersex Condit ions and their Etio logy , Frequency , Symptomatology , Psychosexual Outcome Data and Dif f erent ia l Treatment Under OGR and DSD

Intersex Condition (w/DSD Diagnosis)

Frequency Etiology Symptoms Psychosexual Differentiation

Treatment Recommendation

Hypospadias (46 XY DSD)

Roughgarden (2004) reports the frequency of hypospadias to be 450/1000 for all forms and 1/1725 for moderate and severe forms. However, the frequency of hypospadias is increasing at a significant rate. A 2003 review article notes that comparable increases in mild and severe forms of hypospadias have been noted in the both the United States and Europe and places the frequency at 1/125 live births (Manson and Carr, 2003)

One of the most common congenital mutations, hypospadias also has one of the more complex etiologies. As Manson and Carr (2003) write: “[h]ypospadias is believed to have a multifactorial etiology in which allelic variants in genes controlling androgen action and metabolism predispose individuals to develop this condition. When genetic susceptibility is combined with exposure to antiandrogenic agents, a threshold is surpassed, resulting in the manifestation of this birth defect” (p. 825).

Mild: Urethral opening on glans penis Moderate: Urethral opening on penis shaft Severe: Urethral opening below penis, on body wall No information available regarding risk of gonadal malignancy

The Consensus Statement simply states the following: “Long-term data regarding sexual function and quality of life among those [with hypospadias] assigned female as well as male show great variability” (Lee et al., 2006, e496). I have been unable to find a study that looks at gender identity and psychosexual differentiation solely in those 46 XY DSD patients with hypospadias (they generally include other 46 XY DSD patients such as those with PAIS, or partial gonadal dysgenesis, etc).

OGR: Male assignment and surgical revision were generally recommended, however, physicians often recommended female assignment due to the limitations of phalloplasty. DSD: “In the case of a DSD associated with hypospadias standard techniques for surgical, repair such as chordee correction, urethral reconstruction, and the judicious use of testosterone supplementation apply. The magnitude and complexity of phalloplasty in adulthood should be taken into account during the initial counseling period if successful gender assignment depends on this procedure. At times, this may affect the balance of gender assignment.” (Lee et al., 2006, p. e492).

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Congenital Adrenal Hyperplasia (CAH) (46 XY DSD; 46 XX DSD)

Non-Classic/Late-Onset: 1/66 • 1/27 for

Ashkenazi Jews • 1/52 for

Hispanics • 1/62 for

Yugoslavs • 1/333 for

Italians • 1/100,000 for a

mixed Caucasian population

Classic: 1/17,000 • 1/300 for Yupik

Native Alaskans • 1/800 for other

Native Alaskans • 1/3,000 on La

Reunion Island • 1/5,000 in

Switzerland • 1/7,000 in

Brazil • 1/8,000 in the

Arab population

90%- 95% of all cases of CAH are caused by 21-hydroxylase deficiency. The various forms are the result of variations in an individual’s specific level of enzyme function and other factors such as variations in androgen metabolism and sensitivity. Decrease or complete loss of enzyme activity results in a decrease in cortisol production which triggers the overproduction of adrenocorticotropic hormone (ACTH) by the anterior pituitary gland – a hormone which stimulates cortisol production by the adrenal glands – leading to the overstimulation of adrenal steroid synthesis (and the hyperplasia or overgrowth of those adrenal cells involved in steroidogenesis). Progesterone substrates 21-hydroxylase would normally convert to deoxycorticosterone to 11-deoxycortisol begin to

Non-Classic/Late-Onset: Onset post year 5, symptoms include: early puberty, thick hair in a masculine body pattern, possible male pattern baldness, menstrual irregularity. Classic (Simple Virilizing): Varying levels of virilization in XX females; No external symptoms in males Classic (Salt-Wasting): Same phenotypic symptoms as those with SV-CAH, plus fatally impaired salt metabolism. No information available regarding risk of gonadal malignancy). It is worth noting that 46 XY CAH individuals referred to “clinically unrecognizable” because the increase in androgen

94.8% of those 46 XX individuals raised female identified and lived as female while 5.2% experienced gender dysphoria and 2% transitioned to male. Of those 46 XX individuals raised male, 12% experienced gender dysphoria while 88% did not (Dessens et al., 389). It is worth noting that all of the concern and data regarding psychosexual differentiation in patients with CAH focuses on those 46 XX patients, with the assumption being that increased testosterone could only make a boy more of a boy and the concern is identifying and preventing gender transition.

OGR: Sex assignment is not an issue with 46 XY patients. Female assignment for 46 XX patients due to the impossibility of creating a functional penis and gonadectomy to avoid the development of a “discordant phenotype” and to avoid gonadal malignancy. DSD: The Consensus Statement states that “evidence supports the current recommendation to raise markedly virilized 46,XX infants with CAH as female” (plus gonadectomy) however in 2010, Consensus Statement co-authors Lee and Houk recommended male assignment for severely virilized 46 XX CAH patients (with gonadectomy).

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of Israel • 1/9,000 in

Austria • 1/40,000 in the

United States

accumulate and are converted to androgens by active enzymes in the environment, leading to an increase in androgen production and the virilization of XX individuals over the lifespan (Miller and Auchus, 2011)

production does not result in genital ambiguity in these patients.

Androgen Insensitivity Syndrome (AIS) (46 XY DSD)

Complete AIS (CAIS): 1 in 13,000 (R) • CAIS in births

originally classified as male: 1/20,000

• CAIS in births originally classified as female: 1/8,000

Partial AIS (PAIS): 1 in 130,000

AIS in both complete and partial forms are the result of mutations in the genes which code the Androgen Receptor (AR) protein, located on the X chromosome at Xq11-12. Severity of androgen resistance correlates with severity of mutation. As of 2008 there were approximately 750 known AR mutations associated with conditions such as CAIS and PAIS (Oakes et al. 2008)

CAIS: typical female external appearance; 2% risk of germ cell malignancy PAIS: varying levels of virilization; PAIS (Non-scrotal gonads): 50% risk of germ cell malignancy

PAIS (Scrotal gonads): Unknown

CAIS: The first case of female to male gender transition in a patient with CAIS was reported by T’Sjoen et al. in 2011.

PAIS: Of those with PAIS, 9% transitioned from female to male and 1% reported gender dysphoria without transition (Mazur, 2005, p. 414)

OGR: Female assignment for those with CAIS and PAIS and gonadectomy to avoid the development of a “discordant phenotype” and to avoid gonadal malignancy. DSD: Female assignment in those with CAIS. Regarding those with PAIS, the Consensus statement fails to give clear directive sex assignment, simply noting that “among patients with partial androgen insensitivity syndrome (PAIS), androgen bio- synthetic defects, and incomplete gonadal dysgenesis, there is dissatisfaction with the sex of rearing in ~25% of individuals whether raised male or female” (e491).

Though the table on page e493 of the Consensus Statement outlining “Risk of Germ Cell Malignancy According to

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Diagnosis” recommends “Biopsy and ???” for the gonads of CAIS patients, gonadectomy for those PAIS patients with non-scrotal gonads and “biopsy and irradiation for those PAIS patients with scrotal gonads, the Statement formally recommends that “the testes in patients with CAIS and those with PAIS, raised female, should be removed to prevent malignancy in adulthood” a page earlier (Lee et al., 2006).

Turner Syndrome (45, X0) (Sex Chromosome DSD)

Turner Syndrome: 1 in 2,700

• 1/600 in Moscow

• 1/9,500 in Edinburgh

Turner syndrome is the result of a nondisjunction event during meiosis that results in the loss of part or all of an X chromosome. Some individuals may have part or all of the Y chromosome present in some or all of their cells as a result of crossing over events.

Turner Syndrome: undeveloped ovaries, short stature, lack of secondary sex characteristics; 1-12% risk of germ cell malignancy depending on genotype.4

Turner Syndrome: (-Y)= 1%; (+Y=12%).

No Information Available

OGR: Patients typically have female-typical genitals at birth such that sex assignment at birth is typically not an issue. Female assignment is assumed in these cases. DSD: Female Assignment still presumed. Gonadectomy recommended for those +Y, no action with regards to gonads recommended for those (-Y) (Lee et al).

Klinefelter Syndrome (47, XXY) (Sex Chromosome

Klinefelter Syndrome: Reports vary between 1 in 500 (Visootsak and

Klinefelter syndrome is the result of a nondisjunction event during meiosis that results in the presence of

Klinefelter Syndrome: possibly impaired fertility; development of feminine secondary sex characteristics at puberty.

No Information Available

OGR: Patients typically have male presenting (if sometimes atypical) genitals at birth such that sex assignment at birth is typically not an issue. Male assignment is assumed in

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DSD) Graham, 2006) and 1 in 1,000

• 1/500 in Germany

• 1/7,400 in Winnipeg

an additional X chromosome in some of all of the cells of XY individuals. The extra X chromosome in 47, XXY results sporadically from either meiotic nondisjunction where a chromosome fails to separate during the first or second division of gametogenesis or from mitotic nondisjunction in the developing zygote (Visootsak and Graham, 2006).

“In infancy, males with 47,XXY may have chromosomal evaluations done for hypospadias, small phallus or cryptorchidism, developmental delay. The school-aged child may present with language delay, learning disabilities, or behavioral problems. The older child or adolescent may be discovered during an endocrine evaluation for delayed or incomplete pubertal development with eunuchoid body habitus, gynecomastia, and small testes. Adults are often evaluated for infertility or breast malignancy” (Visootsak and Graham, 2006, 1)

Though many are infertile, there are reports of individuals reproducing without medical assistance and a study 42 individuals with Klinfelter’s found

these cases. DSD: Male Assignment still presumed. Gonadectomy recommended for those (+Y), no action with regards to gonads recommended for those (-Y) (Lee et al., 2006).

Vistook and Graham (2006): “Androgen replacement therapy should begin at puberty, around age 12 years, in increasing dosage sufficient to maintain age appropriate serum concentrations of testosterone, estradiol, follicle stimulating hormone (FSH), and luteinizing hormone (LH)” (pp. 4-5)

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that 29 or 69% of those studied had sperm adequate for use in IVF using testicular sperm extraction and intracytoplasmic sperm injection (Visootsak and Graham, 2006).

No information available regarding risk of gonadal malignancy

Non-XX or non-XY Sex Chromosome DSDs (excluding Turner and Klinefelter Syndromes)

Non-XX or non-XY (excluding Turner and Klinefelter Syndromes): 0.639 per 1,000

• XYY: 1/1,100

• XXX: 1/2,000

• XXYY: 1/6,500

45, X/46 XY (Mixed Gonadal Dysgenesis, Ovotesticular DSD):

Like Klinefelter and Turner Syndromes, these sex chromosome aneuploidies are the result of nondisjunction events during meiosis.

Non-XX or non-XY: The majority of these patients are phenotypically male or female are thus go undiagnosed, however, there can be variability in phenotype (Roughgarden, 2004, p. 292). The effects on physical and cognitive development increase with the number of extra Xs, and each extra X is associated with an intelligence quotient (IQ) decrease of approximately 15–16 points, with language most affected, particularly expressive language skills (Visootsak and Graham, 2006)

No Info Available. OGR: No clear standards regarding sex assignment in these cases given the high variation in external appearance. Assignment is left to the expertise of the treating clinician. DSD: The Consensus Statement also fails to make clear recommendations regarding these patients. It states that for those making the decision regarding sex of rearing in patients with gonadal dysgenesis, factors to consider include: “prenatal androgen exposure, testicular function at and after puberty, phallic development, and gonadal location” (Lee et al., e491).

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Frequency Unknown 46, XX/46, XY (Chimeric, Ovotesticular DSD): Frequency Unknown

Risk of gonadal malignancy depends on gonadal histology (i.e. whether one has ovotestes or not) and the location of the gonads (i.e. whether they are intraabdominal or not). Those with gonadal dysgenesis, a Y chromosome and intraabdominal gonads face the highest risk of malignancy at 15%-35%

(Lee et al., 2006).

De La Chapelle or XX Male Syndrome (46, XX Testicular DSD or 46 XX Ovotesticular DSD)

XX males: 1 in 20,000 to 1 in 25,000 (Roughgarden, 2004; Alves et al., 2010)

De la Chappelle or XX male syndrome refers to individuals who have an X chromosome (or some other chromosome) that has acquired material from the Y chromosome. 90% are those whose translocated Y material contains the SRY or “sex determining region on the Y” gene (SRY-positive), generally as a result of translocation during paternal meiosis, while

SRY –positive XX males: Typically these individuals have male-typical external genitalia and are sterile, however, they may occasionally present with undescended testes and hypospadias (Visootsak and Graham, 2006; Alves et al., 2010).

SRY-Negative XX males can range the spectrum of virilization

No Info Available. OGR: Those with male-typical genitalia are “subclinical” and are generally only diagnosed in adulthood as a result of investigations into infertility. Thus, sex assignment is not an issue. Sex assignment in those SRY-negative patients is left to the expertise of the treating clinician. DSD: Similarly under DSD, sex assignment for those SRY-negative patients is left to the expertise of the treating clinician. The Consensus Statement does state that “Those making the decision on sex of rearing

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10% do not (SRY-negative) (Visootsak and Graham, 2006; Alves et al., 2010, p. 686).

present with normal male to ambiguous genitalia and, testicles or ovotestes (ovarian and testicular tissue) (Alves et al., 2010).

Risk of gonadal malignancy depends on gonadal histology (i.e. whether one has ovotestes or not) and the location of the gonads (i.e. whether they are intraabdominal or not). Malignancy risk for those with ovotesticles is 3% (p. e493).

for those with ovotesticular DSD should consider the potential for fertility on the basis of gonadal differentiation and genital development and assuming that the genitalia are, or can be made, consistent with the chosen sex”(p. e491).

Micropenis 1.5/10,000

(Hatipoglu and Kurtoglu, 2013)

Micropenis is assumed to result from atypical testosterone production and/or sensitivity beginning after the 12th week of gestation (Hatipoglu and Kurtoglu, 2013)


There are no reports of gender transition in patients with micropenis, regardless of whether they were assigned male or female (though 2% reported gender dysphoria). (Mazur, 2005, 414)

OGR: Female Assignment

DSD: Male Assignment: “Available data support male rearing in all patients with micropenis, taking into account equal satisfaction with assigned gender in those raised male or female but no need for surgery and the potential for fertility in patients reared male” (Lee et al., 2006).

True 1 in 85,0002 The developmental True Hermaphroditism is defined Psychosexual OGR: No explicit recommendations

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Hermaphroditism (Ovotesticular DSD)

pathways leading to true hermaphroditism are largely unknown. One, however, is the fusion two embryos into one (chimerism) shortly after conception (Roughgarden, 2004, p. 292)

by the presence of both ovarian and testicular tissue in any combination (ie, one ovary and one testicle, one testicle and one ovotestes etc.). These patients exhibit high phenotypic variation, from having a male or female-typical appearance at birth, to exhibiting genital ambiguity. 3% risk of gonadal malignancy (Lee et al., 2006)

differentiation data specifically for this group is unavailable; likely due to the rarity of the condition.

with sex assignment in these patients left to the expertise of the treating clinician. DSD: Sex assignment remains left to the expertise of the treating physician, though the Consensus Statement cautions that : “Those making the decision on sex of rearing for those with ovotesticular DSD should consider the potential for fertility on the basis of gonadal differentiation and genital development and assuming that the genitalia are, or can be made, consistent with the chosen sex” (p. e491).

5 α reductase deficiency

Uncertain; up to 130 in 1000 in the Dominican Republic

5 α reductase is responsible for the interconversion of testosterone and dihydotestosterone. XY patients with this deficiency generally present as typical females at birth.

Phenotypic presentation among those with XY chromosomes and 5αRD2 deficiency can vary, however, the majority present as typically female at birth and begin to virilize at puberty in response to endogenous testosterone production using other isozymes of the enzyme within the extraglandular tissues (Andersson, Russel and Wilson, 1996). Malignancy risk is unclear, though reported by the Consensus Statement to be 0% (Lee et al,

56%- 63% of patients transition from female to male (Cohen-Kettenis, 2005, p. 400)

OGR: Female Assignment DSD: The Consensus Statement fails to made clear recommendations regarding sex assignment in these cases. Rather it states “Approximately 60% of 5-α-reductase (5αRD2)-deficient patients assigned female in infancy and virilizing at puberty (and all assigned male) live as males” (p e491). They caution that for these patients who are diagnosed in infancy, “the combination of a male gender identity in the majority and the potential for fertility (documented in 5αRD2...deficiencies) should be

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2006). discussed when providing evidence for gender assignment” (p. e491).

17β-Hydroxysteroid Dehydrogenase-3 Deficiency

Frequency Unknown (Andersson et al.)

17β-Hydroxysteroid Dehydrogenase-3 is responsible for the interconversion of testosterone and androstenedione. XY patients with this deficiency generally present as typical females at birth.

Phenotypic presentation among those with XY chromosomes and 17β-Hydroxysteroid Dehydrogenase-3 deficiency can vary, however, the majority present as typically female at birth and begin to virilize at puberty in response to endogenous testosterone production using other isozymes of the enzyme within extraglandular tissues (Andersson, Russel and Wilson, 1996, p. 122). Malignancy risk is unclear, however Lee et al. report it at 28% based on 7 studies of 2 patients (p. e493).

39%-64% of patients transition from female to male (Cohen-Kettenis, 2005, p. 400)

OGR: Female Assignment DSD: The Consensus Statement fails to made clear recommendations regarding sex assignment in these cases. However, as with those with5αRD2- deficiency, it cautions that for these patients who are diagnosed in infancy, “the combination of a male gender identity in the majority and the potential for fertility…should be discussed when providing evidence for gender assignment,” while noting that the potential for fertility in these patients remains unknown (p. e491). Further, it recommends “watchful waiting” with regards to these patients gonads (p. e491).

Cloacal Exstrophy

1 in 250,000

“Cloacal exstrophy of the bladder is a severe variant of the bladder exstrophy-epispadias-cloacal exstrophy complex involving an abdominal wall defect and associated with omphalocele, bladder exstrophy, short-gut syndrome, separated pubic bones, and variable additional severe malformations such as spina bifida and clubfoot. The penis is

A 2005 literature review by Meyer-Bahlburg found that of 51 patients assigned female, 33 (64.7%) were living as female, 7 (13.7%) as females with possible gender dysphoria and 11(21.6%)as males (only 8 of the 51

OGR: Female assignment due to the impossibility of creating a functional penis (Meyer Bahlburg, 2005b, p. 424). DSD: The Consensus Statement issues no firm recommendations regarding treating those with cloacal exstrophy, simply remarking that “individuals with cloacal exstrophy reared female show variability in gender identity outcome, but >65% seem to live as female” (p.

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often aplastic and bifid, and sometimes entirely absent” (Meyer-Bahlburg, 2005b, p. 424).


subjects were adults). Of the 15 patients assigned male, all (100%) were living as males (p. 425).

e491). Both Arboleda, Sandberg and Vilain (2014), and Houk and Lee (2008), however, indicate that the majority of clinicians (~80%) now recommend male assignment for XY patients with cloacal exstrophy.

Note. Compiled from Andersson, Russel and Wilson, 1996; Alves et al., 2010; Arboleda, Sandberg and Vilain, 2014; Cohen-Kettenis, 2005; Hatipoglu and Kurtoglu, 2013; Houk and Lee, 2008; Lee et al., 2006; Manson and Carr, 2003; Mazur, 2005; Meyer-Bahlburg, 2005b; Miller and Auchus, 2011; Oakes et al., 2008; Roughgarden, 2004; T’Sjoen et al., 2011; Visootsak and Graham, 2006.

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Appendix B Gender Ident i ty Disorder in DSM-IV-TR and Gender Dysphoria in DSM-V

DSM-IV-TR DSM-V Gender Identity Disorder in Children (302.6) and Gender Identity Disorder in Adolescents or Adults (302.85) A. A strong and persistent cross-gender

identification (not merely a desire for any perceived cultural advantages of being the other sex). In children, the disturbance is manifested by four (or more) of the following:

1. Repeatedly stated desire to be, or insistence that he or she is, the other sex

2. In boys, preference for cross-dressing or simulating female attire; in girls, insistence on wearing only stereotypical masculine clothing

3. Strong and persistent preferences for cross-sex roles in make-believe play or persistent fantasies of being the other sex

4. Intense desire to participate in the stereotypical games and pastimes of the other sex

5. Strong preference for playmates of the other sex In adolescents and adults, the disturbance is manifested by symptoms such as a stated desire to be the other sex, frequent passing as the other sex, desire to live or be treated as the other sex, or the conviction that he or she has the typical feelings and reactions of the other sex. B. Persistent discomfort with his or her sex or sense

of inappropriateness in the gender role of that sex. In children, the disturbance is manifested by any of the following: in boys, assertion that his penis or testes are disgusting or will disappear or assertion that it would be better not to have a penis, or aversion toward rough-and-tumble play and rejection of male stereotypical toys, games, and activities; in girls, rejection of urinating in a sitting position, assertion that she has or will grow a penis, or assertion that she does not want to grow breasts or menstruate, or marked aversion toward normative feminine clothing. In adolescents and adults, the disturbance is manifested by symptoms such as preoccupation with getting rid of primary and secondary sex characteristics (e.g., request for hormones, surgery, or other procedures to physically alter

Gender Dysphoria in Children 302.6 (F64.2) A. A marked incongruence between one’s

experienced/expressed gender and assigned gender, of at least 6 months’ duration, as manifested by at least six of the following (one of which must be Criterion A1):

1. A strong desire to be of the other gender or an insistence that one is the other gender (or some alternative gender different from one’s assigned gender).

2. In boys (assigned gender), a strong preference for cross-dressing or simulating female attire: or in girls (assigned gender), a strong preference for wearing only typical masculine clothing and a strong resistance to the wearing of typical feminine clothing.

3. A strong preference for cross-gender roles in make-believe play or fantasy play.

4. A strong preference for the toys, games, or activities stereotypically used or engaged in by the other gender.

5. A strong preference for playmates of the other gender.

6. In boys (assigned gender), a strong rejection of typically masculine toys, games, �and activities and a strong avoidance of rough-and-tumble play; or in girls (assigned gender), a strong rejection of typically feminine toys, games, and activities.

7. A strong dislike of one’s sexual anatomy. 8. A strong desire for the primary and/or secondary sex

characteristics that match one’s experienced gender. B. The condition is associated with clinically significant

distress or impairment in social, school, or other important areas of functioning.

Specify if: With a disorder of sex development Gender Dysphoria in Adolescents and Adults 302.85 (F64.1) A. A marked incongruence between one’s experienced/expressed gender and assigned gender, of at least 6 months’ duration, as manifested by at least two of the following: 1. A marked incongruence between one’s

experienced/expressed gender and primary and/or

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sexual characteristics to simulate the other sex) or belief that he or she was born the wrong sex.

C. The disturbance is not concurrent with a physical intersex condition.

D. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.

Specify if (for sexually mature individuals): Sexually Attracted to Males Sexually Attracted to Females Sexually Attracted to Both Sexually Attracted to Neither 302.6 Gender Identity Disorder Not Otherwise Specified: This category is included for coding disorders in gender identity that are not classifiable as a specific Gender Identity Disorder. Examples include: 1. Intersex conditions (e.g.. partial androgen insensitivity syndrome or congenital adrenal hyperplasia) and accompanying gender dysphoria 2. Transient, stress-related, cross-dressing behavior 3. Persistent preoccupation with castration or penectomy without a desire to acquire the sex characteristics of the other sex

secondary sex characteristics (or in young adolescents, the anticipated secondary sex characteristics).

2. A strong desire to be rid of one’s primary and/or secondary sex characteristics because of a marked incongruence with one’s experienced/expressed gender (or in young adolescents, a desire to prevent the development of the anticipated secondary sex characteristics).

3. A strong desire for the primary and/or secondary sex characteristics of the other gender.

4. A strong desire to be of the other gender (or some alternative gender different from one’s assigned gender).

5. A strong desire to be treated as the other gender (or some alternative gender different from one’s assigned gender).

6. A strong conviction that one has the typical feelings and reactions of the other gender (or some alternative gender different from one’s assigned gender).

B. The condition is associated with clinically significant distress or impairment in social, occupational, or other important areas of functioning.

Specify if: With a disorder of sex development Specify if: Posttransttion: The individual has transitioned to full-time living in the desired gender (with or without legalization of gender change) and has undergone (or is preparing to have) at least one cross-sex medical procedure or treatment regimen—namely, regular cross-sex hormone treatment or gender reassignment surgery confirming the desired gender (e.g., penectomy, vaginoplasty in a natal male; mastectomy or phalloplasty in a natal female). Other Specified Gender Dysphoria 302.6 (F64.8) This category applies to presentations in which symptoms characteristic of gender dysphoria that cause clinically significant distress or impairment in social, occupational, or other important areas of functioning predominate but do not meet the full criteria for gender dysphoria. The other specified gender dysphoria category is used in situations in which the clinician chooses to communicate the specific reason that the presentation does not meet the criteria for gender

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dysphoria. This is done by recording “other specified gender dysphoria” followed by the specific reason (e.g., “brief gender dysphoria”). An example of a presentation that can be specified using the “other specified” designation is the following: The current disturbance meets symptom criteria for gender dysphoria, but the duration is less than 6 months. Unspecified Gender Dysphoria 302.6 (F64.9) This category applies to presentations in which symptoms characteristic of gender dysphoria that cause clinically significant distress or impairment in social, occupational, or other important areas of functioning predominate but do not meet the full criteria for gender dysphoria. The unspecified gender dysphoria category is used in situations in which the clinician chooses not to specify the reason that the criteria are not met for gender dysphoria, and includes presentations in which there is insufficient information to make a more specific diagnosis.

Note. Complied from APA 2000, APA 2013a